PET/MRI - How often?

I know what you mean Shelly,

It's so frustrating that they can't do a test like those just for the peace of mind it gives.  I suppose we could pay for them out of pocket but I know they are very expensive.  That whole "symptom" thing freaks me out, for God's sakes, if there's symptoms, that CAN'T be good right?

Sharon

I guess my Dr.  is old school. I will be having chest, adominal CT scan and a Nuclear Bone scan in November.  My cancer was DX in Nov. 2009.     I also have to have a mamo on my left breast then.

Same here,if there are symptoms,sounds crazy to me! I don't get it.I didn't even have a lump,just routine mammo for years,and look where that got me.I did comlain of rib pain and onco sent me for a bone scan,which came back clear.That set my mind at ease.I see the surgeon on Fri.and I have been having breast pain in my good breast,I can't wait to see what she says.

My doctor said no follow-up scans unless symptoms warranted further testing. Shelly56, just like you I had absolutely no symptoms that gave me any warning that something was amiss. I had negative mammograms for years, but did have very dense breasts. Never once did my gynocologist suggest an MRI because of the dense tissue. If that would have been done, I wouldn't be here on the stage III boards! MRI after diagnosis certainly showed my problem. I ended up with stage IIIc and many lymph nodes positive.

I am struggling with whether my back pain (around bra hook line) needs to be scanned. It seems more muscularskeletal than anything but is persistent. Spoke to ONC nurse who said to try taking 600 mg of Motrin three times a day for a week to see if this helps. So far that answer is no. Like others here, I don't want to cry wolf all the time for every little ache and pain, but I need to know this thing isn't back again doing damage somewhere else! I try to push this cancer diagnosis out of my mind but it is never far from the surface. I am scheduled for an echo on Tuesday to see if heart function is still okay to continue my Herceptin.

Also - is it just me - but I absolutely dread that October is Breast Cancer Awareness Month! It is everywhere from the grocery store to the clothing store and everywhere in between! No wonder I can't seem to get this thing out of my mind. I know this is for a good cause, but trying to keep focused on anything else but cancer right now seems next to impossible. Anyone else feel the same?

I finally made it to the visit with my onc when he said I'll see you in 3 months.  It was my DH that asked about scans.  He response was that he will only do scans if the symptoms warrant it. I'm OK with that.  What bothers me is when I asked him if I have anything bothering me how long should I wait to contact him.  I was expecting him to say 2 or 3 weeks.  He siad to contact him immediately. I feel like I'm waiting for the other shoe to drop.

I'm two and half years from diagnosis and two years from active treatment (except for Arimidex). A year ago, as I started to plan my reconstruction phase, I asked my onc for a follow up CT/PET scan as none had been done since treatment ended the year before. He thought that was an OK idea and ordered it for me.

Since then, I've only had bloodwork testing at my quarterly visits. Everthing has looked good, so I just graduated to every four months.

No more mammograms for me since I had bilat mxs and DIEP recons. I won't have any more scans on a regular basis, only if something in my bloodwork is abnormal or if I have physical symptoms.

No scans for me either..

every few years I feak a bit and have ascan for various aches and pains

...although we all would love to believe that finding mets earlier will prolong our lives..there is no evidence..much of medicine is based on evidence...which is the reason we are not offered them without symptoms...

To me ..peace of mind...keeping my fear at bay...is an important reason to have the occasional scan...so if a long period of time goes by( a year or more)..I bring up my continuing aches and symptoms and get scanned.

 Because of various symptoms,I have has 3 bone scans since diagnosis...and 1 abd CT..and 1 head CT....my onc will not do PET scans for BC patients unless something equivocal comes up on one of the other tests. I am good with this approach..if I complain they check..otherwise I continue on my merry way trying to keep this as a thing of my past.

I see onc every six months, breast surgeon alt six months.

I get bloods every 6 months, and mammo/us/mri of my remainig breast yearly or more often if symptoms arise.

A negative scan gives me many months of fearless living!

I have had lower back and hip pain ever since I began radiation and now that I finished it.  It is worse at night and whem I first get up.  I have had 3 sessions of acupuncture so far, and the pain is getting duller.  I can't take anti-inflammatory meds, only arthritis strength Tylenol. 

My ONC also said only a chect xray every year unless I have symptoms.  However, after neoadjuvent chemo, I still had 18/51 positive nodes, extra capsular extension and a 3.2cm tumor.  Because of my path report, I will be doing more treatment, get more scans and be followed much more closely.  Before I knew how much cancer was still left, I wasn't ok with a chest xray once a year.  I know there is risk of to much radiation with too many scans, but it's still scary.  Is taht the real reason for not doing them, or is it that insurance doesn't like to pay for them? 

Thanks SherriG,

I have been cyberstalking your posts because they are very encouring and of your ILC tag.  That is what I have, so I have been using your diagnosed date as a touchstone and hope to be cancer free too!  Sometimes it's hard not to go to those dark places though.