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To Kumar and Nempark

Kaleena's picture
Kaleena
Posts: 2058
Joined: Nov 2009

Dear Kumar and Nempark:

I just wanted you to know what I have been going through and it may help you a bit:

As with any scan, you need to look at the bottom under Impression.   Although the main body of the report can be somewhat disburbing, it is in the impression part that tells you what it really means.

I got a CT scan last January (2014) and it appeared normal as to cancer was concerned.  However, under impression it did say that my soft tissue mass which I have had for several years and has been stable was growing again and that my left ureter was passing through it and that I had moderate hydronephrosis.  They suggested I see a urologist.

As a result of that, I have had 3 PET scans last year.  and I just had one Wednesday.  The soft tissue mass is now 6 x 2.9 cm and it is in the perirectal space and left of the vaginal cuff and abuts the rectum.   (Had CT guided needle biopsy part of it in April - negative)   It does have mild to moderate SUV reading of 3.4 (kept going up from 2.5).   They are saying that I am stable and are not at this time doing anything.  However, because of the kidney stuff, I had a stent put in in August and have had it replaced several times already, most recently Feb 4th.   On my PEt scan Wed, it appears that my stent migrated upwards into the kidney (it would be better if it went into the bladder).  I am still waiting for my urologist to call me and advise whether or not I have to go back in to have it taken out.  Sorry, got off track.  Back to you two.

In those reports, it says a lot of things.  I have some scattered spots on my liver (hemagomas???),   Of course, I have the soft tissue mass with an FDG avid    I got all upset with the last PET scan and was questioning things but it all comes down to the last part of the report.  Mostly they are looking for cancer spots and if they don't see anything you will get a stable report.   Also, if they are concerned, it will indicate further testing, seek physician, etc.

I hope this helps.   My best to both of you.

 

Kathy

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Hi, Kathy,

It is good to hear an update on how you are doing.  I have had only one PET Scan (and had to fight to get that covered by my insurance company) so I don't know much about the SUV values.  What does the SUV reading have to be to raise a red flag?  Your doctor doesn't think that your soft tissue mass is cancer?  I certainly am hoping that is what he is thinking.  You have had to deal with so much lately that I am hoping and praying that all goes well with you.  None of us should have to deal with this dreaded disease and all the complications treatment causes. 

Take good care of yourself, Kathy!

Cathy

Kaleena's picture
Kaleena
Posts: 2058
Joined: Nov 2009

Hi Cathy!

With regard to the mass, it is still undetermined, but to get to the actual part that has activity would be major major surgery which he does not want to do unless absolutely necessary and as long as the growth has not increased intervally within six months, they are just keeping an eye on it.   Of course, then there is the issue with the kidney as the ureter passes through this mass and the blcokage from the brachytherapy.  I now have a stent which requires being replaced every 3 months or until such time as the mass is removed so it could be that I need to do this for awhile.  With regard to the SUV/FDG, all it indicates on the record that the avidity is low to moderate and since last year has been increasing ever so slightly.  But what numbers they are looking for, I really don't know. 

Everything seems to be going ok however on my recent PET it indicated that the end of my stent was coiled in my ureter.  I am still waiting to hear from my urologist.  She needs to review the images and because my gyne/onc is in another state, when she got the images, she couldn't open them fully so I am still waiting.  If the stent moved down into the bladder - no problem.  However, if it moved towards the kidney then they will have to retrieve with a needle through my back into the kidney.  This is what I am waiting to hear.  The later procedure doesn't seem much fun and I will definitely be asking more questions.

It is weird that when I am really feeling terrible - they seem they can't find anything wrong. When I am feeling fine, then I get the above info.  Yikes!   

Anyway, I have been meaning to write to you to see how things are going with you.  I am so tired of the cold weather and it was great the past few days even though it was raining.

Talk to you soon!

Kathy

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