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New Study - Pet/MRI scan - Has anyone had this?

Kaleena's picture
Kaleena
Posts: 1067
Joined: Nov 2009

There is a new scanning technique in the works.  It has been out since summer of 2013 I think.  Instead of a Pet CT this is a PET/MRI.    It is supposed to be the best in scanning.   If you are in the study, they will do a PET/CT then they will do the PET/MRI right after.   They will use the same tracer for both tests.   You still have to get the PET approved though, which is the catch.    Has anyone had this done?   If it is successful, it could replace the PET/CT and would allow more people to get it especially those who need scanning frequently. And it has less radiation because the MRI does not have radiation.

If you were involved in this study, how did it go?

 

Kathy

 

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

How are you doing?  Reading about your doc issues...gee does this stuff never end.  Hope you've found a good one and can get some resolution.

 

Within the last 3 months I've had two CT/PET scans....and I just hate the radiation it hits my body, but what other option do I have???  I'd definitely jump on anything with PET/MRI as the latter has NO radiaiton as you know.  Do I understand you've got a few things showing up from other testing?  This was first time I had a PET (Sept '13) and this was the tell-all for a cancer recurrence and quite intersting how it works with rating the mestasices.  

Hang in there, this soon shall pass....

Hugs

Jan

Kaleena's picture
Kaleena
Posts: 1067
Joined: Nov 2009

Hi Jan:

I finally found a doctor!   He seems to be on the same page as me as he indicated that my circumstances dont fit the usual mold so he is taking my symptoms with caution.  Although he feels that the minimal progression noted in my recent CT scan is probably scar tissue, the fact that I am having pain and discomfort has to be ruled out.   So once again we ordered a PET.  Although he wanted me to do the PET/MRI study but it may be over.  I will let you know.   In good news, I just got APPROVED for my PET scan.  I am scheduled for Wednesday.   If the PET scan is good, then they may do a biopsy just to make sure.

I have always had a small mass show up on my scans unchanged.  But this last CT scan showed some minimal progression and it appears that my left uterer is passing through this mass with slight narrowing.   

Also, my doctor wanted me to have a blood test.  Specifically to check for Vitamin D.   Have you heard anything with regard to low Vitamin D levels?   I got my result back and it was a 14 which is inadequate on the boarder of deficient.    I haven't spoken to the doctor about this.   I am to see him once I get my PET scan.

Thanks for posting Jan and for all your concerns, positive influences and well wishes!   Hope you are feeling fine and I continue to wish you well.

Kathy

Double Whammy's picture
Double Whammy
Posts: 2277
Joined: Jun 2010

Seems a lot of oncologists and primary care physicians are really paying attention to Vitamin D levels these days.  In the breast cancer world, there is a school of thought that Low vitamin D is not a good thing as it represents decreased immune function and a great environment for pesty cells to grow.  My D level was 13 prior to my diagnoses and I absolutely did not take it seriously and was very sporadic about taking Vitamin D (I mostly didn't).  Then I was diagnosed with breast and uterine cancers and I started paying attention as did both my primary care doc and oncologists.   I took prescription D during chemo (50,000 IU for however long they told me, don't remember), and levels went up to almost normal.  Now they're low again, but hovering around 24 so not so low.  I'm currently taking 4000IU of D daily via liquid D because oncologist says that although there is no science to support it, the liquid may be absorbed better.  I'll have my levels checked in a couple of weeks again and we'll see if both the increased dose and liquid form brings it up.  I'm very good about taking my D daily now. 

Be sure to discuss D levels with your doc when you see him.  14 is pretty low.  I think they want breast cancer survivors at over 60, but I don't see how I'll ever get there.  I even sit in the sun pretty often to get some natural D!   On my very first visit to my oncologist she talked about my D levels and said "10-15 minutes in the sun every day and don't tell the dermatologist".  It didn't work.

Suzanne

 

Kaleena's picture
Kaleena
Posts: 1067
Joined: Nov 2009

Thanks for your reply Suzanne.   After 8 years, this is the first time anyone ever suggested having my Vitamin D levels checked.   I am definitely going to check this out closely.  I have also recently found out from my mammogram that I am a Catagory 2 and that I also have a benign looking nodule.   The density issues could be caused by the low Vitamin D levels too.  I'll let you know what I find out.  I also wonder if that is what is causing me to have bone spurs.????

Anyway, on a lighter note, I told my husband he has to take me to the beach!  Laughing

Kathy

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

Wanted to see if you had the PET/MRI scan.....results?  Curious as to how easily it was to get this approved since it's a newer setup?

 Yesterday had my 3-month consult with my naturopath oncologist as I'm coming to the end of my final chemo treatment in March.  My GYN oncologist will do some type of scan after the last treatment, but at this juncture he's not sure.  Asked my naturopath her recommendation, knowing I've had 2 PET/CTs since my recurrence last August.  Her take -- PET/MRI as this MRI can be used to replace the radiation loaded CT scan.  As well, use the MRI for my follow-ups.  Interesting insight!!

Anyone have thoughts and/or using the MRI's for follow-ups?  The last thing any of us want is more radiation from scans which could potentially have a bearing on adding more cancer to our already fragile bodies.  

Life is good~Wink

Jan

 

Kaleena's picture
Kaleena
Posts: 1067
Joined: Nov 2009

Jan,

Due to this lovely weather, I had to cancel because of the most recent storms and of course, waiting for the insurance company to approve the scan. (yeah, finally approved!)  I am now scheduled to have this done on Monday. (Feb. 17th).    I believe I should have the results quickly, but as soon as I get them, I will let you know.    With regard to the PET/MRI, that is exactly what I was told that the MRI replacing the CT scan greatly reduces the radiation exposure especially since there is no radiation with regard to the MRI.   I will try to gather up all of the information that I can on Monday.    Its funny that the insurance companies would rather you first have a CT scan, then a PET scan or PET/CT, and then an MRI (which I had to do in 2009). and now recently I had to have two CT scans within 6 months of each other before I could get this PET scan.    So in reality, the insurance companies really arent that concern about the radiation exposure, do you think?

Meanwhile, in November, I ended up getting pneumonia.  Or at least could have been.   I went to a med-express and after checking my lungs gave me a breathing treatment (never had one) and indicated to me that if he were to give me an x-ray it would probably come back pneumonia, but that they didn't want to expose me to radiation so they had to call it a severe upper respiratory infection.    I told the doc that a little radiation from that x-ray wasn't going to kill me especially with the amount of radiation I have had since 2005.    Still didn't get x-ray.

 

In any event, I am just staying positive and happy to finally get approved for the PET scan.   Like you say, Life is Good!

Kathy

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

Whom in US hasn't been hit by the crazy blizzards all over?  I'm in mid west and we never have winters this bad and truly just had it with the snow and cold.  Guessing if one has to have treatments, now is the time when who wants to be outside....so I  take naps!

Insurance co's want to make money and you bet they don't give a darn about our health such as with radiation.  Have a friend with very intense dense breasts and still does the mammogram and like clock work it comes back with "unknowns" on test, so off to the ultrasound.  She has battled with the insurance co. for years complaing why not just do the ultrasound?  They tell her, NO, not their policy.  If they just did ultrasound would save her the time and them the $$$, but NOPE!!!

Great information on the scans....thanks!  Good luck next Monday on scan and let us know how you faired.  

THINK SPRING~

Jan

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

I was able to get an MRI for one of my follow ups.  Here is the twist:

much more exp than CT SCAN and ins companies bark at that

takes a lot longer to do and to do pelvic and abdoman could take a long time a few hours. 

you have to be comfortable with an MRI machine - request feet in first and bring your own cd to use headphones to drown out the music

i fell asleep during mine, but my husband got real worried as it took so long and he thought there was a problem

personally I would opt for an MRI all the time.  I will ask my oncologist at my next appt if I could have one instead of the next CT Scan and see what she says

 

Kaleena's picture
Kaleena
Posts: 1067
Joined: Nov 2009

Thanks for the advice.   I will tell my husband also so he doesnt worry if I am in there for awhile.

 

Kathy

laura25's picture
laura25
Posts: 159
Joined: Mar 2011

Hi kathy... Hope all went well

Kaleena's picture
Kaleena
Posts: 1067
Joined: Nov 2009

Well I missed the study that involved getting a PET/MRI.   I did finally get the PET/CT scan on Monday (Feb 17th).   I am still waiting for the results.   I placed a call in today (Wed), but the PA hasn't called me back yet.  I know the doctor was in yesterday.   I am thinking since they didn't call it must be good, but then when I called and asked for the PA and she took my name and put me on hold then came back and said the PA would have to call me back, now I am wondering.

 

In any event, the radiologist indicated that from now on if possible ask to have a PET/MRI.   It is much better for you if you need to get scans more frequently since there is no radiation involved in the MRI compared to CT.  In fact, the radiation is cut in half.  And it also saves you from having to have two separate scans.   I don't know what the impact is with regard to insurance though.

 

Anyway, as soon as I find out my results, I will let you know  Thanks for asking!   At least we have some sunshine today too!

Kathy

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

Glad the scan is behind you now the waiting for the results.  Interesting how all our minds create the "bad" thoughts about why we didn't get to speak to someone about our results.  Now if we weren't dealing with a disease, would we still feel the same way?  Hum...

Exactly what you typed about why do PET-MRI is why my naturopath recommends this option.  Plus with follow-ups continue on with MRI vs CT...definitely less radiation.  The kicker.....the cost difference I'll bet is higher as all PETS are more expensive and many aren't covered until it's a bad situation or possible recurrence.  When I had my "potential recurrence thinking" last August, it was very easy for the oncologist to convey to insurance and get approved the PET.  

Sending you good vibes and know you're in my thoughts....I'll look forward to the good results soon~

Jan

Kaleena's picture
Kaleena
Posts: 1067
Joined: Nov 2009

Thanks for your reply, Jan.   Isn't costs always the kicker!

Anyway, I got two return calls today from the PA.   For most part it is good (nothing urgent).   Here is what they found.  The mass has increased since June.  Not drastically, but it has (probably the pain I have been feeling).   It went from a mass of 2.6 x 1.6 cm with a SUV of 2.4 to a mass of 6 x 1.7 cm with a SUV of 3.   Also, there is a moderate left-sided hydroureteronephrosis which is by this mass or passes through it.   The kidney is fine.  At first, I was told probably nothing to worry about.   But then she called back and recanted that by saying although it looks ok, there is still the posibility that it could be cancer.  Also, I was given a prescription for Vitamin D and to see a urologist about something regarding a stent.   I asked if a biopsy would be warranted and she indicated that they would probably rather just remove the mass but at this time not talking surgery any time soon.

My concern is that at my last recurrence, the scans didn't pick it up at all.  They saw the mass which had been unchanged, but nothing showed differently other than the fact that I was complaining of increased pain.

 

Which is why I was so adament about getting scans this time.   I have been getting increased pain (slowly).  I have gone from not taking any pain meds to taking motrin two or three times a week (once a day).  And the fact that my last two PAPS were ASCUS and the most recent one also HPV positive.   

My husband asked my what my thoughts were.  I told him I know something is going on, but I am not worrying about it because I feel it is slow growing.   I also told him that I was given a prescription for the Carribean to help with my low Vitamin D levels.  lol

My question for the urologist is going to be whether the stent will help or would it be better to remove the mass or is that complicated since the ureter apparently passes through the mass.  Do you have any suggestions on questions I should ask?

Thanks for letting me rant here and giving me those good vibes and thoughts!  

 

Kathy

 

P.S.   I'll have to email you to get info on naturopath

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

Glad you did receive the results!  I'm definitely a specialist with PETs so can only guide you with what I do remember (don't have my notes with me now on PET, otherwise might be more specific).  The SUV rating is big as it describes the intensitivity of the cancer.  Yours relaly didn't change much, and yes the size did.  Must tell you so much of this depends on how we prepared for the scan.  For instance since cancer sucks up sugar, and the PET injects us with glucose (is that what it's called?), it could affect results if had lots of sugars the night before testing.  

Remove the mass?  Where did you say this is located, by kidney?  I know mine was found with supraclavicular node on neck area and doc got a sample and did test for cancer.  They didn't remove is as close to my jugular, so it's here, what little I can feel after the zillion chemo's...lol!

If I were you, get your questions lined out and call back your oncologist.  For some reason I've lost faith in PA, as one in my oncologist office has missed 2 very important things with me.  Luckily I keep records and copies of scans as found on own and called back to as someone else for the answer.  Therefore, if anything important is going on with me, I definitely request only the doc, not PA.  Hopefully you don't have this with your doc's office.  Also, ask the urologist additional questions.  

Bottom line, you know your own body, so if something doesn't seem right, keep digging until you find answers.  Oh and is your CA125 still stable?

Good luck,

Jan 

Kaleena's picture
Kaleena
Posts: 1067
Joined: Nov 2009

They call it a mildly hpermetabolic left perirectoal soft tissue thickening which is now exteding posteriorly to the presacral space.  This mass has been there for years but is now starting to increase in size.   Then they are saying that there is new moderate left-sided hydrouretoroephrosis with a transition point at level of the left perirectoal soft tissue thickening.   

Although I don't want to seem pushy, but it was only through my own forcefullness that my cancer was found originally and at the recurrence.   With the recurrence, all of my scans were negative.  It did show a mass but (as with this one) it appeared stable and it was only through a biopsy that was positive that I was able to have it removed.   Once it was removed, my pain went away.    My pain is starting back up so that is why I think something is wrong or at the beginning of something.  So I will keep actively involved.   If I wasnt going to see my doctor for awhile, I would definitely asked to speak with him.  I, like you, do not trust the PAs when it comes to this sort of thing.

With regard to my CA125, at my staging surgery it was 21.   After that it was anywhere between 3 - 11 mostly 7.   That was with the old testing system.  I understand that since 2010 there is a newer testing system which results prior to 2010 were 20% lower than todays.   Given that, in January it was a 10.9 and just recently 14.    Nothing alarming but given the fact that it was a 21 and I had cancer in both my uterus and ovary, I am not quite sure what to think.   Also, my Vitamin D levels are at a 14.   Is it true that Vitamin D can indicate cancer?

Like you say, you know your own body.  I know something is going on because of the pain that is starting to return and the bowel issues returning.   Once I meet with the Urologist, I will let you know what he has to say.

Thanks for thinking of me.

Kathy

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

Easy for you to say with all the medical terms...gee!  I've no clue on any of it, but definitely you're doing your homework....great!!!

Now I've got your story down and this is someting which was addressed a while back with recurrence, and something is showing up you think?  My oncologist has always told me, if I have a pain in the same area for 2 weeks and doesn't stop....call him.  If not and moves to various spots and non-consistent, not to worry.  

My CA125 after treatments in '09 was 4-6 range.  Always for 4 years of being NED this same range until a year ago it went 4-11, then 6-months later 11-17...then the node on  neck showed up and biopsy revealed the cancer.  Mine was always under the <35 are wchich is normal, but still had recurrence.  Now  my doc isn't sure this is such a great marker for me.  In fact after start of treatmetns went back down and now going up a bit.  Apparently doxil, one drug on, can cause fluctuations in the marker.  Oh who knows I just feel good.

That vitamin D is so, so important.  I was tracking my own prior to the new naturopath whom wants it to be in range of 80-100.  Mine wss 57 last Novemenber and been on 10K serfum D since and now back up to 78.  Not heard D can indicate cancer, but it does help keep the cancer aways in more ways then one.  Problem with D most foods don't have this in them, so really dependant upon the sunlight exposure.  Now this time of year how much sun do we get?  So....very much needed supplement this time of year and eventually in summer switch to less vit D and more reliant on the sunlight.  

Good luck with urologist and we'll be waiting for your news....be strong~~~

Jan

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