is getting scans a good idea?
 

It has been one and half year since my diagnosis and I didn't get any CT/PET scan after my chemo is over. I asked my oncologist to get a CT/PET fusion. She agreed to order one but she doesn't think it is a good idea. Her comments are "why do you want to disturb your mental peace when things are going alright whithout any physical symptoms. There is no difference in prognosis if mets are found earlier(except brain). There are lot of false positives and they increase the anxiety and cuase unnecessary stress."

I am not sure what to do. I am just returning to normal life and started working. Thinking of the scan itself is increasing my anxiety. I am going for a brain MRI but thinking whether to get CT/PET is a good idea.

Please share your experiences.

thanks,
Julie

As far as I can see...
 

Your oncologists view that finding mets early makes no difference is probably based on statistics generated by ALL breast cancers that metastasize, not just her2neu+ breast cancers. Her2neu+ breast cancers behave differently (worse when not treated with herceptin) and their natural history--how long they take to recur, where and how often they metastasize seems to be altered by Herceptin so it seems NO ONE KNOWS.

Someone posted an interesting editorial by Dr. Hortobagyi of MD Anderson saying (even before Herceptin) he knew of a few patients with longer term survival who had only "minimal" mets and the question of whether to try to find mets earlier (and therefore smaller) should probably be readdressed. Hope I quoted this correctly. Wouldn't mind if someone reposted it.

Hope this helps!

Julie, I was in your same position a few years ago--my onc. did not recommend scans after my treatment for the same reasons you mentioned. For me, that was something I could agree with. I was SO anxious about getting scans and had a miserable experience undergoing a CAT scan after the initial diagnosis to check for mets--turns out I was allergic to the iodine constrast dye that they use and started breaking out in hives/freaking out in the CAT scan tube...I think I am really in the minority of people on this board who do NOT get regular scans, but as long as I am not having any symptoms, my onc and I feel that is okay. By the way, I was diagnosed in 2001 and am looking forward to 5 years of survival this summer! (Stage III, er/pr negative, Her2+, large tumor, many lymph nodes, treated with A/C, Taxol, rads, Herceptin)

Julie,
My onc said the same thing. She said that unless I am having pains lasting for more than 2 weeks that they will not scan. She said that there was no reason to make yourself more anxious and that the tx would be the same whether mets are discovered earlier than later. They either respond to tx or they don't. I have a hard time with that too because I have pains all over!! Especially in my back and shoulders. I am trying to keep positive and not worry about all the aches. I don't think the Docs have any idea how we feel. They just don't get it.

Love and Prayers,
Lexi

Hi,

I was stage 3b with 16 positive nodes, and my onc said the same thing, that she didn't reccommend regular scans. I think it took me about 2 years but now I trust her and that decision. I choose to live in faith that I'm fine and I don't do any scans. I do blood tests every 6 months and it's been 4 and a half years.
Fear is a really debilitating emotion. I'm doing my best to stay out of fear in many aspects of my life. It works for me to have trust and faith. I don't take any medication either. I hardly ever even take an aspirin and I'm really grateful. I do try to keep a strong immune system by eating well (organic fruits, vegetables, whole grains, nuts and seeds) and I exercise alot and do yoga and meditation. This is what works for me.
Margaret

Julie;

I just came home from a brain CT with contrast recommended by my onc. I didn't have any symptoms but he wanted a baseline. I am stage 3c because of a supraclavicular node 1 cm tumor. Following my chemo and radiation he had all of my tests redone.....chest x-ray, abdominal ultrasound, CT whatever and has just had this brain ct done and a bone density as he thinks I might need something for the bones. He has agreed to tumor marker tests for me and I am trying to get the Serum her2 into Canada right now. I didn't ask for these tests but did the tumor markers and I have a feeling that as long as I was being reasonable and logical he would agree to anything I wanted. PLUS, he's got a sense of humour....great onc!!

Cathy

I have never had any type of scan done and I have had two bouts of bc. My tumors were quite small and there was no nodal involvement. When I asked about getting a PET after my recurrence, the onc and the surgeon said no. Unless there are symptoms, they felt it was unecessary.

Again, who knows what is best? I am comfortable with the decision. My one year check up (mammogram on the only breast I still have) was clear.

Petesmom

Dear Julie,

I applaud all these brave women before me who have posted. I was one of the people who had all the scans and I will tell you for a week prior and until you get the news, your okay, everything is clear, at least with me, I was a mess. I would wrap up in a cacoon type scenario and just pray everything would come out okay. I wanted the peace of mind that everything would be okay and it was. I did however have the brain MRI's which I am glad I got every 6 months. But as far as the rest, in hindsite, I don't know that I would do it again. This last time I went in for blood tests, I told them no, don't run the tumor markers. I felt better. My onc and the BRICG study I am to have a yearly mam and chest and that is good for me and every 6 months now I have blood work drawn.
So in answer to your question, there is +/- to both. You will have the peace of mind but getting there is a week of well for me, crazy and if not, you will learn to trust your body sooner and be at peace with yourself maybe? That is where I am at now, but it's been a long time coming. Good luck, it's each woman's individual quest to find what will work for her, and this was just my experience.

Re: is getting scans a good idea?
 

Bumping up because times and meanings are changing.

Re: is getting scans a good idea?
 

Same here, my onc only likes to do scans with physical symptoms present or pain. I only request one now when really concerned after a month or so with symptoms and feel I had too many in the past due to my own hysterical emotions!!!!
I stay vigilant but don't request them quite so often, and usually the pain or symptom does go after a week or so!

Re: is getting scans a good idea?
 

I get a breast MRI and digial mammo - 1 x per year each, 6 months apart- onc. orders these.
I also get a vaginal/pelvic ultrasound 1x/year - this is ordered by my GP or ob/gyn - I ask for it, they order it.

Bloodwork 2 or 3x/year - GP orders this.

I get a bone density about every 18 months - ordered by GP.

That's it, unless I have symptoms - once had a 6 day headache just after finishing chemo, had a brain CT. All clear.

Otherwise, nada. I think that is the standard of care in Ontario Canada for stage 1 BC survivors.

all the best
caya

Re: is getting scans a good idea?
 

I get mammos (one side only) and paps (yearly check up things) one a year and blood work every 3 months but scans only if physical symptoms are present. Sometimes I wish my onc. did them more often but then again it would probably just cause undo worry and stress. Every Dr. seems to approach this differently, we need to do what is right for each of us and our peace of mind.

Re: is getting scans a good idea?
 

This has been debated many times and I still say the same. I had no physical symptoms at all when I was diagnosed stage IV with lung mets. Had I waited till there were symptoms, i might have been dead. John Hopkins posted on their website that cases where mets were small in number were easier treated than those where there were many mets. Makes sense, especially in brain mets where number and size mean alot. Being stage IV, I choose to have scans done to make sure that if something does pop up, I will treat it promptly. I will not wait for symptoms that may not develop until it's too late. If I were early stage cancer, I'd have a different approach..

Re: is getting scans a good idea?
 

I just had another MRI because one of the Central Neurocytomas was causing some weird symptoms (I think it presses on my nose and causes watery nose.) Tomorrow I will see the radiation oncologist and get the result and her recommendation.

Before requesting for the MRI through neurosurgery, I had made an appointment with my oncologist because I thought all the discomfort I was feeling had to be caused by breast cancer.

Dr. Ruud carefully listened to me and checked me over. He commended me of being cautious and scheduled a 10-week follow-up.

I almost felt like to cancel the appointment because now I know the problems were caused by the brain tumor. But then again, it won't hurt to get regular physical exams.

All my doctors seem to be following the same guideline - only run scans when there're symptoms/complaints. I think they trust the blood tests more.

Re: is getting scans a good idea?
 

Unless there is a particular reason to utilize the use of scans for evaluation, I think maybe it is best to avoid the radiation. If a person needs it for peace of mind, then maybe it is warrented.

Re: is getting scans a good idea?
 

Hi
I agree with Sherry.There seems to be some discrepancy with regard to stage 4. My own onc and some others believe that the smaller the mets the easier to treat, the better the outcome!!
I don't know if this is validated by any research but the theory at least seems sound!
Ellie

Re: is getting scans a good idea?
 

I have had 2 PET/CT scans now. I would have been more of a mental wreck if I had not had the 2nd one done. The first PET before chemo and Herceptin showed a few glucose avid "hot spots" in places which the doctors didn't like and therefore the 2nd PET was done after treatments were finished. Luckily none of the spots got any larger and no new ones were found. But none went away either including the ones in my thyroid. This gave more ammunition (my thyroid had other problems too) for the doctors to convince me to get it removed.

I'll state that looking at your PET/CT scan images can be uncomfortable because those bright spots where the glucose avid tissues reside are not fun to look at. But I am glad these base-line scans were done. I hope we'll never have to pull them out to compare to others later down the road.---bird

Re: is getting scans a good idea?
 

I didn't have any scans prior to treatment but I didn't have my oncologist involved until after I had the bi-lateral mx. At my last Herceptin appt., we talked about the end of my treatments in May. He said he'll do a baseline PET scan and then get my port taken out. This is my first experience with a PET scan (I've had several CT scans of chest area with pulmonary emboli) but I'm not too worried about it either way. I understand that some docs prefer to have baseline tests for future comparison and that's fine with me.