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Anniversary Question

laura25's picture
laura25
Posts: 160
Joined: Mar 2011

I hear people talk about 2, 1, 10 years NED.... is that the Dx date or the stop treatment date? 

ConnieSW's picture
ConnieSW
Posts: 608
Joined: Jun 2012

I think NED would be after treatment since the hope is that is when the cancer is gone. That would coincide with my first scan..  Cancer survivor to me would be from diagnosis since that is when the whole process starts but I guess that isn't cut and dried.

cleo
Posts: 123
Joined: Sep 2009

Dx and treated late 2007 for Stage 3/4 MMT.  August 2012 - yearly CT scan still clear and after my hospital appointment in December I was told that I need not return for mandatory checking as I had reached 5 years with NED.    Still to self monitor of course with immediate check in if any concern.

plantlady2012
Posts: 49
Joined: Dec 2012

That is just wonderful to hear, Cleo!

 

-Lynn

Hybridspirits's picture
Hybridspirits
Posts: 150
Joined: Nov 2012

Cleo

as i start my journey this month  I was thrilled to read your story.  Thanks for sharing this as it keeps me upbeat

Sharon

ConnieSW's picture
ConnieSW
Posts: 608
Joined: Jun 2012

Cleo, do you continue to see a gyn/ onc at that point or do you revert to a regular gyn?  I would feel safest with the former.

cleo
Posts: 123
Joined: Sep 2009

I continue with my regular Dr/gyn that I always see every three months in conjunction with gyn/onc.    Question in my mind is  -   Do I continue with the CT scans for my peace of mind v the disadvantage of more 'zaps' to the body.    

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

CONGRATS ON 5 YEARS NED!!!  What a wonderful story to spread to others who need good news of encouragement.  

 

I do remember you having MMMT aggressive cancer as I've got, too.  I'm stage 3C,diagnosed Feb '09 and still NED.  

 

You ask if you should continue with CT scans?  Question to you, does and can your doc follow a CA125 tumor marker?  If so, is it reliable?  My doc likes to use this, but every year or so has me do a CT scan which I just had.  CT scans are loaded with radiation which can cause cancer...1 CT is equivalent to 400 xrays!!  That's enough to make you stop and rethink what you feel will work best for you.  Plus if you're prone to worry, possibly continue with a scan once per year.  There comes a point we can become overcome with worry, so do what comforts you the most.

 

Have you done anything different with your lifestyle -- diet, execise, stress release -- to make the 5 year mark?

 

Best to you,

Jan

 

 

cleo
Posts: 123
Joined: Sep 2009

I do have the CA125 check but it is not a reliable marker for me.   I did start off with great intentions 5 years ago re broccolli etc but I now just follow a sensible diet.  Husband with Parkinson's.  Try not to stress and I do have good friends.   My Dr has made her concerns re CT scans very clear and as I am not a worrier...count the blessings and go with the flow!...I think that positive thinking will do the job.

plantlady2012
Posts: 49
Joined: Dec 2012

Cleo, one alternative doctor I went to recommended monitering with MRI's, not CT's or PET's, because the MRI doesn't use radiation.  I didn't investigate it further, because I am just barely post-treatment, and I feel safer getting the PET's at this point.  But perhaps you might like to look into the possibilty of MRI's, if you think you want to continue to moniter.  If you do look into, please let us know what you found out, about it's effectiveness and cost, okay?

--Lynn

cleo
Posts: 123
Joined: Sep 2009

Plantlady.....Immediate reply as I do not live in the states so no help with costs.  My understanding is the the CT shows cancers while the MRI is more for soft tissue/spine/brain tumors.   I did have an MRI early on during treatment as cancer very aggressive....not too keen to go round again!!.   Here all my treatment/scans etc are free. Should I wish to have a CT scan taken privately the cost is $NZ1000.   MRI double that.     If I chose to have a CT scan for peace of mind I would pay.    If there was a concern re my health there would be no cost to me.    I hope that you are progressing well.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

From what I've learned on scans with  uteirne cancer at least, the first choice for scans is CT...and if they find something that need to investigate further, forwarded to MRI/PET.  Apparently each type of cancer has some sorta setup as to what the "standard" procedures are with insurance coverage.  CT should always be approved for follow-up, then go to MRI/PET.  If you request MRI/PET initially for follow-up, etc, don't think insurance will approve.  Now...this is what I've learned and as we all know there are always ways arouind things.  

 

Mary Ann on this site has had her doc intercede and get approval for the initial scan to not be CT, but either MRI or PET (can't remember which).  If you can get your doc to go to bat for you and show why you need MRI/PET initially, go for it.  You have nothing to loose.

 

MRI, yes does not have radiation.  CT scan, especially in pelvic area is equivalent to 400 xrays in radiation exposure.  As to why CT isn't as expensive and MRI is.  I had some lower back issues beginning of this summer and my oncologist knew it wasn't cancer, but did get me in for MRI.  Yes my insurance did approve MRI for this type of issue as needed to look more indepth with the small tissues, not picked up with CT.

 

I always make sure before I have any scans, the RN's have called insurance and gotten it approved and know in advance my out of pocket.  We all need insurance, but oh boy it just doesn't cover everything.

 

Jan

HellieC
Posts: 455
Joined: Nov 2010

I'm interested to read about the US protocols for scanning.  In the UK, the MRI scan is usually used for routine scans, with follow up by CT/PET if something suspicious is found on the MRI.  So far, all of my recurrences (3 of them!) have been identified on an MRI scan and then confirmed as having active uptake by CT/PET.    I guess it probably boils down to a combination of costs and availability of machines.  In the UK, we seem to have a fair number of MRI scanners (most of our major hospitals have them), but CT/PET machines are like hen's teeth.  In the whole of Sussex (which is the county where I live - similar in size to a small US State) we only have one CT/PET suite!

Helen

plantlady2012
Posts: 49
Joined: Dec 2012

Thanks for the info, Jan!

cleo
Posts: 123
Joined: Sep 2009

Repeated - sorry.  Having a bit of trouble with the upgrade!

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