Dr. Love Responded to a Question I had about Scanning!!

I may be wrong but I think that it might be easier for someone with a lower stage to accept not having scans than those of us who are stage iii and definitely those who are stage iv. The presence of lymphovascular invasion in my breast tissue and the number of positive nodes has caused me more concern than the tumors I had in my breast as far as my prognosis going forward.

My oncologist falls on the side of not doing any routine scans. She is of the "wait for increasing, worsening symptoms that never go away" camp when it comes to scanning. And yet there ARE cases of intermittent pain associated with mets. I believe that I have a fairly high threshold for pain and maybe put up with things that others would consider to be chronic. And I'd rather not have a hairline fracture or worse be the telling sign that I've developed bone mets. I'm too active to have something sideline me if it could have been prevented or postponed.

I am approaching my two year diagnosis date this week (and have my 3 month check-up) and in February it will be two years since my first chemotherapy treatment. February will also be another 3 month check-up). As it is ... I know we will be discussing a switch to an AI unless chemopause reverses itself in the next 3 months. I would really prefer to have a scan to confirm or deny mets at that time (and possibly get an answer to some of the intermittent pain - perhaps the signs of arthritis in my back prior to diagnosis (and confirmed by scans prior to mastectomy) are just becoming more pronounced now.

I did ask the orthopedic surgeon when I was x-rayed for a knee problem about bone mets. He said he did not see any signs and when I asked what they were he said they would actually show up as holes in the bones. Is that correct?

grammy. I've started taking matters into my own hands re other doctors. My oncologist fusses about my echocardiograms and I found a cardiologist who now handles my matters of the heart. It's been a huge relief. Maybe you can do something similar.

dogsandjogs- My lung mets were a total surprise on MRI and CT as I had only complained of new arm /hand pain and weakness and went to a neurologist who ordered the MRI. Sub-clavicular ( near collar bone ) lymph node 1.6cm found on same side as my prior BC. The new 1cm lung lesion was seen in the opposite side ( left) on both studies. Post radiation a new area of concern on the right side also. I had no breathing issues other than some SOB along with seasonal allergies . 2 months post RADS now and still have neuropathy pain in my right hand ( less but still there) Trying to keep up w/the Tamoxifen pills which I hate.

momine. Thank you. Bernie Siegel's book Love, Medicine, and Miracles says the same thing. He calls them the Exceptional cancer patients. I have a cousin who has had three parts of his aorta replaced (the whole thing is bad). He is constantly not happy about the surgeries and does things he's not supposed to do. A nurse at his last surgery said those are the ones who always live. I call him the cockroach because nothing can kill him. I tell him I want to be a cockroach too.

momine. Let's both keep bitching. :-)

So sorry to hear that Granny---is the chemo the treatment for the lung mets? What does SOB mean?

I am going for a stress/echo on Friday and will ask them for the name of a pulmonary specialist to see what is going on with the lungs.

grammy. Now I have to ask for the words behind FOS.

Love the story about your son. I also use aluminum free deodorant. I have to laugh. I use that because aluminum has some association with Alzheimer's. Guess that's not going to be an issue for me. :-) Should have used the regular stuff

oooooooohhhhh. I'm that all the time. :-)

Love your post Granny! Laughing as I type this---

I do believe this subject is very controversy and oncologist certainly don't seem to agree as far as catching mets early. I was recently diagnosed with 1 met to the pelvis. It was caught by my tumor markers doubled which sent me for scans. I was lucky that my oncologist did believe in tumor markers. I personally do believe that catching mets early will make a difference as far as outcome. Luckily my radiation oncologist really believes this too and is being very aggressive. He believes that with limited mets there is still a chance of curing that person. I think that studies on this subject is outdated and the fact that imaging has tremendously improved the ability to catch mets early should be considered. Also, the fact that less than 10% of mets is caught before it is extensive should be considered. That is mets from all cancers, so with that being said it seems to me that it is difficult to get a controlled group of limited mets to follow. I believe in the end, it is whatever you are comfortable with. I know, for me I am so glad we did catch it early, I will never have to wonder if it would have made a difference. I say, whatever you feel comfortable with, just make sure there are no regrets in the end.

For more information as far as whether it makes a difference, google ogliometastatic disease. There is more info coming out about this.

After reading the thread opener, my mind immediately went to QOL, and I am in favor of interval screening for those with high risk of recurrence, so that mets can be found before it comes to pain for the patient.

I'm not saying scan radiation is not terrible. It is. I'm not saying early-stagers can't have spread. They can. But I am saying doctors need to take an individual approach and not just cover us all with the same blanket statements and procedures (or the lack of them.) For some, tumor markers can be a very good way to follow-up. For those who have successfully had their remission monitored with the markers, it is a good, minimally invasive, no-rads way to monitor a patient. The other scans may not be needed. For others, this method simply does not work well. Therefore the doctor needs to know YOU when devising a follow-up plan.

Personally, I think Dr. Love is doing a disservice in referencing a study so out of date, without qualifying it as such. She knows better.

p.s. Agree with Kandy, that ins. cos. often draw the line of what docs order and when. Ins. cos. rarely see us as individuals.

Sorry Dr. Love, but I want the scans because I'm Stage IV. I want to know if a lesion is developing BEFORE it starts causing symptoms. I have a spinal met that was putting pressure on my spinal cord and causing pain. If I had caught it earlier it wouldn't have gotten so big that I risk permanent nerve damage. The tumor could have been radiated at a smaller size and it would have been safer for me. A simple Xray would have found it. I believe that catching new lesions earlier saves us unnecessary pain and a host of other problems. Will it slow down the spread of the disease...who knows? But just from a palliative standpoint, I want to catch progression as soon as possible so I don't have to put wherever they pop up at under excess stress by having larger or more extensive lesions than if caught after symptoms develop. For example, pancreatic cancer will kill you in less then a year once symptoms are noticed. If it is found before symptoms show, a chance, small but better than nothing, of living much longer is possible. I just believe that catching the progression, before it is too extensive, and treating it has to be of some benefit.

Thanks Susan for the vote :-) That's my vote too!

You know I'm praying that all your scans are clear!!

Hugs friend!

Diana