How often do you scan?

I just love the happy faces on your profile pic....so inviting!!

I think scans and follow-up appts are more on side of the docs recommendations.  I'm aggressive MMMT, stage 3C, diagnosed '09.  My doc at  the first year had me in every 3 months and all was great.  Then I started reading on the radation we get from the CT scans(1 CT scan is equivalent of over 400 xrays), therefore, we had a chat, as I started the conversation.  Wondered about all the radiation and was  concerned.  The CA125 marker is fairly accurate for me (well we hope, but still don't rely 100%) and been good thusfar, so he decided to not do many CT scans.  Suggested I watch for any pains or symptoms -- basically something just not right with my body.  Notice something not right, call him and we'll then do a scan.  Then again I've not had a recurrence, therefore, if that was my situation might possibly be more conservative and have more scans????

Must say we did a scan this past January, as didn't have one for over a good year, and outside of small clouding spot on my lung, due to my congestion cold and allergies, all is well.   

If my memory is correct, the first year and half I had appts with him every 3 months, and since I'm every 6 months.  Sure can be scary when have the lymph node issues as you've had, then doc cuts you off from scans and later follow-up exams.  From reading I've done over the years and read various postings here from others, many times more scans don't necessariy help us anymore then waiting longer.  Not quite saying this correctly, but basically more scans and exams, don't always catch things right away.  With some scans things don't even show up unless a certain size.  

As my therapist has mentioned, some people just feel better with more follow ups and scans vs. others (like me) don't need to know ever detail and sorta a risk taker.  To each his own might be more of what I'm trying to convey.  Plus depends on each of our situations and docs ways of working.  

Hope this helps......

Jan 

laura25 said:

Thanks!

Thanks so much Jan!  The picture was taken for my daughters confirmation. 

 

My Dr doesn't really believe in to much scanning.  When I stopped treatment he wanted every 6 months but i was so scared that I told him every 3.   So now that its over 2 years and my latest scan was clean, he wants it done yearly.  I believe his exact words were "We have zapped you enough".     I was curious to find out what the protocol was for others.  

 

Thanks so much for your response.  I happy to hear all went well with your last scan.  Its such a stressful time waiting for the results.   I love reading your tips on diet and exercise. 

 

Laura

I have once again joined the club of sit and wait. Had my second CT scan since surgery. They found three more lung nodules, now I have four. All small and my Gyn/Onc has been in touch with a pulmonary/Onc. They are too small for him to remove at this point to even check for cancer laporscopically and they don't want to open me up...heck I don't want me opened up either.

The first one was found when they only scanned the bottom portion of the lungs, the other three when they went back this month and scanned the entire lungs. I have never been a smoker but did have blood clots in my lungs several years ago. It is questioned if these nodules are the results of the blood clots? No one knows.

One of the biggest issues are the CT reports, they contradict each other with the size of the largest one. I called the imaging center and they want the doctor to call them to ask for a re-reading. I asked them if the $7,000 dollars me and my insurance company was paying them didn't give me the rights of calling them on their own contradictions?! They sort of back tracked and said they would get back with me Monday. Geesh, anyone can see the errors!!! Of course now they want to scan me every three or four months to watch for changes but I'm with you ladies.....the scans alone can cause cancer so what am I doing here?! I had positive Peritoneal Washings on my surgery date so of course I'm concerned 

but still can't decide on the proper course of action in this case. I guess I will decide once I get an accurate idea as far as growth on the one that is 6.7 mm.

I hope everyone has a nice lazy Sunday!

Lisa

jazzy1 said:

Lisa

Sorry you're in the waiting pattern...never easy is it?  Been there many times and I'd just love to jump off a bridge and be done with it, but somehow come to grips with  myself and realize what other choice do I have????

I find this lung stuff to be very confusing as we do know our cancer goes to the lungs, amongst other areas.  Many times it isn't a thing, but you seem to have different stories. Will tell you this, they're overly cautious with anyone having "cancer"  on their health chart history.  

Never had to call the  facility/hospital which did any of my scans or procedures, but  can imagine we'd hear  the same thing you heard.  Great to see you hung on and  told them you want some answers, especially when they got paid....good work! Everyone looks at these scans thru different eyes, as to why you have contradictions, but you'll get to the bottom...keep pushing Lisa!

We must go to bat for ourselves, who else will?  I've had many talks with my docs and don't let them walk over me, as I come to the appts with knowledge and that carries lots of weight.  Just because they have a title prior to their name, doesn't mean they know it all.  

Hear you on the radiation from the ct scans, but at times we have NO choice, but have the scans.  Alternative could be much worse.

You don't have enough information in front of you to make an educated decision, so see what the Monday call from the facility tells you and if that's not a comfort to you, get a second opinion.  

Happy Sunday to you as well....

Jan 

 

When a doctor gets the CT report he takes it as it is, he doesn't pull the last report and compare. They don't have time. we on the other hand totally remember the last report and of course compare. This is where I found two errors either on the 2nd report or maybe on the doctor who read the first one. Either way their comments don't match. I heard from a nurse on the CT imaging center side that how the radiologists do it is to record verbally their findings and then someone else listens to this recording and does a written report. She said its not unusual for there to be an occasional error between not understanding exactly what the doctor has recorded or the person typing missing a number.

FYI, I learned from Jan and Mary Ann to get a copy of every single report!!!! Thanks Ladies!

jazzy1 said:

Lisa...UR welcome~

When my scans are done, I go to the same  facility each time so they can go back and compare to previous scans.  My most recent scan has notes on top of my DIAGNOSIS -- cancer with back pain.....had cancer '09, then MRI '12 with back pain suggesting bulging disk/sciatica pinching.  As well my history with type of cancer, etc, etc.  All is at top of my CT/MRI as this facility holds all the records.  Does your scan have any of this documented at the top?

Supposedly with advent of our new Obamacare, we'll have access to our records at all facilities throughout the country....am I right?  Errors?  Oh I can believe this as to why we need to get copies or you can even ask for it on DVD for your review (if you can figure it out, I couldn't) or the doctor.

More people involved as you mentioned ==  more errors.

Keep us posted my friend,

Jan

 

 

Yes they also give you a report synopsis at the top....the issue was the first scan said one nodule 6mm in size....

the 2nd scan said they found two more since they did full lung scan and the two previous (remember there was only one)

one had grown from 4mm to 6.7 mm ( remember it was 6mm) and another one remained at 3mm. The doctor picked up that there was a growth from 4mm to 6.7mm he didn't even know it was supposedly 6mm to begin with not 4mm. This report of course had him concerned where if it truly was 6mm to begin with 6mm to 6.7 is almost nothing in difference. Anyway no one seems to care but me.

Doggone it I really want to say another word here, I want them to figure out what the heck is the truth. We will see.....two scans were done and the cost was aprox 14,000.00 for both and these guys don't have to even be accurate?????? I wonder how many people have had surgeries based on bad information? Not to mention the patients stress level!!!!

 We often talk about 2nd opinions but now it may come to second opinions on even test results, Holy COW!

Lisa

Kathy G. said:

Hi Lisa!
Sorry to hear you

Hi Lisa!

Sorry to hear you are going through this waiting game stuff again since we started this process at about the same time.

I hear your frustration about the test results and the doctors. My brother had his 1st colonsocopy a few months ago, they found an embedded polyp, took forever to schedule out- patient surgery to take it out, and then the drs. office never called him back with the results... and his calls to find out the results were not returned!

He wants his biopsy results!!!

Amazing!

Meanwhile, he goes a 2nd dr. not wanting to deal with the first doctor anymore, and they tell him without the pathology report from the 1st dr. they cannot determine if he needs treatment. He tells the 2nd dr. they are giving him the run-around that they have not gotten the report from the hospital. The hospital is saying they sent it to the doctor! The second doctor just tells him he must PUSH the first doctor to get the results. He is yanking all the right chains, but still has not gotten the pathology report.

I really don't get all this with some of the medical community. We...and/or our insurance companies are paying an arm and a leg for service... and THIS is what we get.

I wish I could come down there and do something for you.

Please keep us posted. You're always in my prayers!

Kathy

The radiologist who read the second scan just called me. He said he was correct that there were two spots earlier and that one has grown so keep an eye on it. he also said the first radiologist had made an error, they don't say that to often do they. He tried to explain how it can be hard using digital calipers to measure nodules of this size.....but not for him. He went back and did some re-measuring and felt certain he was right. He also mentioned that an increase in size of small nodules can just be inflammation due to ....basically anything. I guess we will see what's what in a few months.

Thanks

Lisa

jazzy1 said:

Lisa

Well at least you know now.  I'd be pretty confident when you brought to their attention, these results are more accurate...ya think, too?

Inflammation?  Hum..that's what I heard with my minor very small spot on lung...plus I was dealing with a cold at time --- INFLAMMATION.  I do agree with that option to WATCH, and at times just too small to even worry bout but yes they will keep a watchful eye on them changing in size.  

I've got a small spot on my liver...noticed from first CT after treatments '09.  I flipped out but apparently with higher level scans they show more things that really are just part of getting older...gee!  The spot on my liver is always noted on the CT scans as do them at same place.  No changes....thankfully!  Same type of thinking like our exterior skins with the moles and small age spots that show up as we get older.  

Where do you stand with doc getting the info from radiologist?  

Hopefully you feel a bit better!!  Keep smiling as life is sure challenging at times....

Jan 

Your right of course as we age all kinds of things pop up to make us not even recognize our selfs in the mirror so why not on the inside too! The Doc has taken the pulmonary onocologists view as far as scanning again in 4 months. if you can have a "beauty mark"on your liver than I can have four on my lungs!!!!! 

I almost through out a very old personal gym that has been collecting dust and spider webs in the garbage, maybe I need to show this 51 year old body that it needs to get back into shape muscle wise. I am active but flabby still. it would be good to forget about my health worries by starting to act HEALTHY! Just mowed the yard, cleaned the garage, staked up my tomatoes and peppers and cleaned my back deck. Spring is here!!!!! By the way this is the first year I'm doing an organic garden for obvious reasons.

Everyone have a great night!

Sisters three said:

Spot on liver must have been scary Jan!

Your right of course as we age all kinds of things pop up to make us not even recognize our selfs in the mirror so why not on the inside too! The Doc has taken the pulmonary onocologists view as far as scanning again in 4 months. if you can have a "beauty mark"on your liver than I can have four on my lungs!!!!! 

I almost through out a very old personal gym that has been collecting dust and spider webs in the garbage, maybe I need to show this 51 year old body that it needs to get back into shape muscle wise. I am active but flabby still. it would be good to forget about my health worries by starting to act HEALTHY! Just mowed the yard, cleaned the garage, staked up my tomatoes and peppers and cleaned my back deck. Spring is here!!!!! By the way this is the first year I'm doing an organic garden for obvious reasons.

Everyone have a great night!

 

 

Good way to put the markings on our inners -- BEAUTY MARK!!!

Exercise is great for us as I'm an avid exercise girl, but have toned it down, none of the marathon type runner guilt.  In fact, last week read another interesting article of importance of at least 120 min/week of good exercise.  Not the yoga type, but more like fast walking and weight bearing exercises which forces us to breath in/out deeply. More and more resarch showing less chances of recurrences or helps even at the begining when enduring our chemo treatments. Research doesn't lean towards the marathon racing as too harsh for our systems to recover -- hum, and I did this running for at least 28 yrs or more.

The newest technique for more low-intensity exercise is called PEAK 8...http://backstromwellness.com/Peak8.pdf.  Definitely get the dust off your gym equipment or get out and walk in the beautiful weather, while getting some vitamin D too.

Hang in there~

Jan

Kathy G. said:

All I can say is that I wish

All I can say is that I wish I had the energy (and blonde hair) you ladies have...running marathons, pulling out old exercise equipment, lifting weights...

Lisa, not sure about your hair color, but it doesn't matter. Am just glad to hear that there is nothing to worry about right now.

My kids came over and helped me put a garden in the weekend before Mother's Day. How cool was that for one of my gifts?

Anyhow, best to all..may we all stay healthy or at least 'benched' from the waiting game!

Kathy

Laura and Jan, thanks for the information! Disapearing spots on CT scans is very helpful information. Yes I will get the excercising going. I have felt fragile since surgery but that was in January. Time to stop being timid!! Thanks for the support,

four months is a long time to get in shape and deep breath those spots away.

Cathy, gardening is a love of mine. Roses, herbs and vegetables. Enjoy your garden and your own lovely brown hair!

Lisa