Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

MRI Update

derMaus
derMaus Member Posts: 558

My doctor and I reviewed the results of my January 9th MRI this week, and the results were concerning but not entirely alarming.  The overall tumor size continues to shrink and it's now mostly necrotic tissue from what I can tell. However, there's a 'bad' place within it that lights up and has actually grown, almost doubling in size in two months.

That's worrisome since it appears the immunotherapy is losing efficacy. My oncologist ordered a biopsy to get fresh tissue for analysis of any future chemo needs. The good news is that the bad area is only about 1" and thus can be CyberKnifed rather than surgically removed. CyberKnife was on the table before but being held in abeyance lest surgery be needed (the surgeon was against more radiation, thus the wait-and-see mode). Since surgery is no longer an option, I can proceed with CK ASAP. My doctor also ordered a PET scan before I start treatment. The PET at the end of October was clean - except for the current tumor - and we want to make sure it's still that way. I wish the news was other than it is, but am glad I'm being closely monitored and this was caught early on. Compared to what others are going through I feel I shouldn't complain, but I do feel like I just can't get out from under this. I know having immunotherapy IS being in treatment, but the last several months have been so placid that it feels like I've been on treatment hiaitus. I guess I got spoiled to the idea that Keytruda was the answer to everything, alas. I'll keep you posted as I get more information. 

 

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,928 **
    B, I don't think anyone

    B, I don't think anyone thinks you are complaining.  I wish the CK could just completely eliminate it.  Thank you for the update.  

  • BluebirdOne
    BluebirdOne Member Posts: 475 **
    derMaus

    I have been following closely your experience with the CK, as I think you may be the only one having it? I could be wrong about that. I find everone’s journey/story interesting and informative so please continue. Kind thoughts and best wishes to you. 

     

    Denise

  • EZLiving66
    EZLiving66 Member Posts: 1,476 **
    Bobbi, I hope the CK approach

    Bobbi, I hope the CK approach works because it seems like the Keytruda has been working. Hang in there! It seems like every week something new is coming along.

    Love,

    Eldri

  • zsazsa1
    zsazsa1 Member Posts: 547
    Glad to hear that it seems as

    Glad to hear that it seems as if you only have one small area that can possibly  be Cyberknifed.

    You had an MRI to assess metastases?  What did they use to make active tumor "light up"?  As of now, my oncologist's attitude is that surveillance imaging doesn't increase survival, and since it's radiation (CT or PET/CT), could be harmful.  I would be very willing to have MRI instead, IF it could detect early metatstases well.

  • Tamlen
    Tamlen Member Posts: 323 **
    Bobbi, I'm glad SBRT is out there

    Bobbi, I'm glad SBRT is out there as a good option for you. It seems to me that we Stage iV folks benefit from multi-pronged care like you're getting. Big hug to you and please keep us posted about how it goes with the biopsy, scan, and CK.

  • Wannabeatit
    Wannabeatit Member Posts: 98
    edited February 2019 #7
    Thinking of you brave lady.❤️

    Thinking of you brave lady.❤️

  • paris11
    paris11 Member Posts: 159
    Be strong

    Be strong

  • MAbound
    MAbound Member Posts: 1,156 **
    Stubborn Cancer

    I can't believe how stubborn your cancer is proving to be! You found us a few months after I did with a similar story, but with a tumor resistant to "standard of care" treatment. It's just so unfair, but a perfect example of why tumor assays and/or genomic testing should become part of standard of care so no one goes through ineffective front line treatment like you, Lady Mox, and others. Cost can't be the issue because failure ends up costing so much more monetarily, physically, and emotionally. The bean counters are just so short-sighted. I sure hope your upcoming CK is finally the answer, but I'm so mad that you have to keep doing this for so long.

  • Donna Faye
    Donna Faye Member Posts: 427
    Thinking of you

    I think I know how you are feeling. We just get use to things going smoothly and then we get a kick back. I am so glad you are being watched closely and glad there are other treatments. You are not complaining - your are just telling the facts and giving yourself a chance to hear from others in the same boat. We all are pulling for you !

     

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,801 **
    Bobbi, I hope the CK takes

    Bobbi, I hope the CK takes care of that new area and you are able to find the right road to NED. You are an inspiration to many and I appreciate you sharing your latest issues. It helps all of us to understand what may happen and the various treatments being suggested. Please let us know how you are doing along the way!

    Love and Hugs,

    Cindi

  • SF73
    SF73 Member Posts: 316 **
    Dear derMaus. I was hoping

    Dear derMaus. I was hoping that Keytruda would kill all the remaining cancer cells so you never had to worry about this again. It seems for the most part it is doing its part except for this 1 inch stubborn thing. I am so glad that you are being monitored closely and that they can handle it with CK. Would they be having a genomic profiling of the tissue they biopsy? Can it mutate so quickly? Is it possible for that 1 inch minority not to have any MSI? So surprised to hear MRI can catch such things.  You are so strong and such a role model to all of us. Wishing you all the best from North California. 

  • derMaus
    derMaus Member Posts: 558
    edited February 2019 #13
    zsazsa1 said:

    Glad to hear that it seems as

    Glad to hear that it seems as if you only have one small area that can possibly  be Cyberknifed.

    You had an MRI to assess metastases?  What did they use to make active tumor "light up"?  As of now, my oncologist's attitude is that surveillance imaging doesn't increase survival, and since it's radiation (CT or PET/CT), could be harmful.  I would be very willing to have MRI instead, IF it could detect early metatstases well.

    Why MRI

    Per my oncologist, MRI is the gold standard for measuring soft tissue masses. Not necessarily for finding cancer - that's the PET/CT scan - but for accurately measuring the size of tumors for surgical staging. Since we were monitoring an already-known-cancer, potentially to operate, the MRI was the most accurate way to measure shrinkage (or growth). I personally like MRI's because they have no impact (i.e. radiation), but they're only useful in certain circumstances.

  • Kaleena
    Kaleena Member Posts: 2,059
    Glad you are getting it taken care of

    derMaus.  Its good to know you are getting that taken care of.  I had such a tumor myself.  It always lit up (low range of course) on the PET scan.   I had it biopsied in 2014 which came back negative but the area still always lit up.  I started having pain in that area.   The tumor had shrunk and grew.  Once I started having pain it was growing albeit slowly.   I was to have it rebiopsied when they went in for surgery in December of 2015 when they were reimplanting my ureter.  My gyne oncologist advised my husband that there was no tumor to biopsy.  Upon getting the report, the gyne oncologist apparently knicked my bowel and therefore didn't go any further and let the urogologist take over from there.   I tried to follow up with this gyne onc and the appointments got cancelled.  I was then scheduled for a CT scan in July 2017.   I went to the gyne onc for advise and review.   He never examined me and said I needed stomach massagges.  I told him I was now in daily pain.   The CT Scan indicated growth and a new small tumor.   Still no exam.   I left that office and found a new gyne onc who then ordered another biopsy from a different angle.  This one came back positive.  I then had that tumor removed (along with part of my large bowel; and then a part of my small bowel due to my mesh in April 2018.   I did have a positive lymph node also that was also removed.  Since everything was removed, I did not need chemo or radiation.   Just a watch and see.  Next scan MRI on Thursday (Feb 7th)

    I was not a match for immunotherapy either.   If I was, they were going to give me Keytruda.

  • BluebirdOne
    BluebirdOne Member Posts: 475 **
    Kaleena said:

    Glad you are getting it taken care of

    derMaus.  Its good to know you are getting that taken care of.  I had such a tumor myself.  It always lit up (low range of course) on the PET scan.   I had it biopsied in 2014 which came back negative but the area still always lit up.  I started having pain in that area.   The tumor had shrunk and grew.  Once I started having pain it was growing albeit slowly.   I was to have it rebiopsied when they went in for surgery in December of 2015 when they were reimplanting my ureter.  My gyne oncologist advised my husband that there was no tumor to biopsy.  Upon getting the report, the gyne oncologist apparently knicked my bowel and therefore didn't go any further and let the urogologist take over from there.   I tried to follow up with this gyne onc and the appointments got cancelled.  I was then scheduled for a CT scan in July 2017.   I went to the gyne onc for advise and review.   He never examined me and said I needed stomach massagges.  I told him I was now in daily pain.   The CT Scan indicated growth and a new small tumor.   Still no exam.   I left that office and found a new gyne onc who then ordered another biopsy from a different angle.  This one came back positive.  I then had that tumor removed (along with part of my large bowel; and then a part of my small bowel due to my mesh in April 2018.   I did have a positive lymph node also that was also removed.  Since everything was removed, I did not need chemo or radiation.   Just a watch and see.  Next scan MRI on Thursday (Feb 7th)

    I was not a match for immunotherapy either.   If I was, they were going to give me Keytruda.

    OMG!

    Thank you for your summary. The best part about this forum is to hear other’s stories. I had an incompetent gynecologist who probably never saw a serous DX. He biopsied my tumor and then proceeded to try and remove it thinking it was a fibroid. So he removed the bulk of the tumor ignorant to the fact it was a highly aggressive serous cancer. God only knows what spread he caused by his utter incompetence. I learn something new almost everyday by reading other survivor’s stories, even though right now I am barely 3 months NED. I learn from everone’s retelling of their experiences. Thank you one and all for sharing your experiences with us. 

     

    Denise

  • BluebirdOne
    BluebirdOne Member Posts: 475 **
    derMaus

    In our condition, there is no such thing as complaining, whining, crying or even a total emotional collapse. (which I have done in several public instances). On this journey giving others crucial information about your treatment options, success or failures is INVALUABLE to those of us who need info even if in the end we are fortunate to not need it. Information is power. We are here to listen and support. 

    xxoo

    Denise

  • derMaus
    derMaus Member Posts: 558
    Kaleena said:

    Glad you are getting it taken care of

    derMaus.  Its good to know you are getting that taken care of.  I had such a tumor myself.  It always lit up (low range of course) on the PET scan.   I had it biopsied in 2014 which came back negative but the area still always lit up.  I started having pain in that area.   The tumor had shrunk and grew.  Once I started having pain it was growing albeit slowly.   I was to have it rebiopsied when they went in for surgery in December of 2015 when they were reimplanting my ureter.  My gyne oncologist advised my husband that there was no tumor to biopsy.  Upon getting the report, the gyne oncologist apparently knicked my bowel and therefore didn't go any further and let the urogologist take over from there.   I tried to follow up with this gyne onc and the appointments got cancelled.  I was then scheduled for a CT scan in July 2017.   I went to the gyne onc for advise and review.   He never examined me and said I needed stomach massagges.  I told him I was now in daily pain.   The CT Scan indicated growth and a new small tumor.   Still no exam.   I left that office and found a new gyne onc who then ordered another biopsy from a different angle.  This one came back positive.  I then had that tumor removed (along with part of my large bowel; and then a part of my small bowel due to my mesh in April 2018.   I did have a positive lymph node also that was also removed.  Since everything was removed, I did not need chemo or radiation.   Just a watch and see.  Next scan MRI on Thursday (Feb 7th)

    I was not a match for immunotherapy either.   If I was, they were going to give me Keytruda.

    Kathy, thank you for

    Kathy, thank you for reminding me of the go-around you had with the great "is it or isn't it" diagnosis. I do recall reading about this as you went along, but not about the stomach massages. How did you not slug him ?!?  I am heartened by the notion of another biopsy from a different angle, since the tumor doesn't seem to be a chomprehensive mass - as others have suggested. Thanks again for the recap, it really helped - as did all the support and information I've gotten on this post. 

  • derMaus
    derMaus Member Posts: 558
    SF73 said:

    Dear derMaus. I was hoping

    Dear derMaus. I was hoping that Keytruda would kill all the remaining cancer cells so you never had to worry about this again. It seems for the most part it is doing its part except for this 1 inch stubborn thing. I am so glad that you are being monitored closely and that they can handle it with CK. Would they be having a genomic profiling of the tissue they biopsy? Can it mutate so quickly? Is it possible for that 1 inch minority not to have any MSI? So surprised to hear MRI can catch such things.  You are so strong and such a role model to all of us. Wishing you all the best from North California. 

    They'll do a new Foundation 1

    They'll do a new Foundation 1 report on the new biopsy. I'd d asked for it last time but they were taking a wait and see approach: since the Keytruda seemed to be working, the presumption was that if it was shrinking then by definition this new (intestinal?) cancer would also be MSI-H, just like the original uterine was. But, really, nobody knows. I do like your theory that what's left is the only part that wasn't immuno-sensitive. I hadn't thought of that so thanks for the suggestion. 

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    Good care

    Sounds like you’re getting great and comprehensive care. Keep us posted.