PET Scan results - Several nodes lit up again!

daisy366
daisy366 Member Posts: 1,458 Member
in Uterine/Endometrial Cancer #1
Nurse called with results. My first thought was, "Super. She's calling with good news!" NOT.

I have 3 pelvic nodes and one post ascending aortic node that lit up.

Plan: get the pelvic nodes biopsied Feb 3. using CT imaging. I've heard this procedure is not painful. If positive, this will be my 2nd recurrence of UPSC. I really am grateful that no organs are involved.

I see doc on Feb 10. Any thoughts or comments on any of this?

Question: will they biopsy all 3 or should I ask?

Mary Ann
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Comments

  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    #2
    MaryAnn
    Sorry the results were not the GREAT news you desereved...

    I say, sure why not ask if they can biopsy all in one day....

    I am happy you will not have to wait long for the biopsy. Doesn't it make you wonder how crazy it is these insurance companies balk at approving these PET scans??
  • snowbird_11
    snowbird_11 Member Posts: 160
    #3
    Not the news you wanted to
    Not the news you wanted to hear! But, yes, be thankful no organs are showing involvement. I've had both CT-guided and ultrasound-guided node biopsies by the Interventional Radiologists. Whether to biopsy one or more is based on difficulty and safety issues of reaching the location. I had 2 nodes with only one safely accessible so had one biopsied via CT guidance. For the ultrasound-guide, several were readily accessible and biopsied. The more tissue they can get the better since the amount removed is quite small. But, in order to do so, they must insert a long needle and avoid organs, major blood vessels, etc. Like real estate, location is everything!

    Have you had your ca 125 checked to see if it correlates? I've been dealing with lymph node recurrences since Fall '09, after completing first line carbo/taxol in June '08. The issue with findings in lymph nodes is that it's an indication of the presence of cancer cells in the body that the lymph system has been attempting to eradicate but the cells can get 'stuck' in nodes and proliferate, or the node simply has too much to handle and growth occurs. Cancer doesn't exactly 'spread' thru lymph system it's more a matter of the body's defenses getting a little too much work to handle. Cancer cells can spread locally or be carried thru vascular system. The lymph system picks up these bad guys and tries to get rid of them.

    There is more thinking these days to monitor such recurrences and not treat unless they are causing problems. This saves the body from the harmful assault of chemo until it is necessary. I tended to jump into chemo too readily cumulatively damaging my body when all I had were a few hot spots/ enlarged nodes on the PET/CT scans. So now I've got to hope my body can handle chemo if/when I have symptoms that need treatment. In the meantime, I work on complementary therapies and am quite please that my ca 125 has risen only slightly in the past 3.5 months and is just over 1/3 of what it was 8 months ago before doing a short stint of localized radiation treatment.

    This is definitely a disease that requires individualized treatment plans as we all follow a unique path that must be navigated without a precise road map.

    Mary Ann, you are strong and healthy -- the best possible situation for dealing with this. Still, I wish you did not need too!

    Hope this helps,
    Annie
  • Cindy Bear
    Cindy Bear Member Posts: 569
    #4
    Mary Ann
    I just want to say , hang in there. I know how hard waiting is. And if you're anything like me, telling you not try to worry, is worthless advice. Just keeping you in my thoughts and prayers and sending big cyber hugs your way.
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #5
    Mary Ann sorry to hear your PET scan results
    Hope your biopsy gives you good results. you will remain in my prayers. In peace and caring.
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #6
    Ro10 said:

    Mary Ann sorry to hear your PET scan results
    Hope your biopsy gives you good results. you will remain in my prayers. In peace and caring.

    Wish I had some sage wisdom
    to pass on, but I have only hugs and prayers that it all goes well and you have a plan of action in place February 10 that you're comfortable with.

    Suzanne
  • paris11
    paris11 Member Posts: 159
    #7
    Double Whammy said:

    Wish I had some sage wisdom
    to pass on, but I have only hugs and prayers that it all goes well and you have a plan of action in place February 10 that you're comfortable with.

    Suzanne

    AW ****!
    Hi Mary Ann,

    I am so sorry. It's Saturday nite. I'm tired. I read your post. And I thought "OH ****!!!"

    Will it ever end??? Where is the cure???

    You are in my prayers.

    Connie
  • paris11
    paris11 Member Posts: 159
    #8
    Double Whammy said:

    Wish I had some sage wisdom
    to pass on, but I have only hugs and prayers that it all goes well and you have a plan of action in place February 10 that you're comfortable with.

    Suzanne

    AW ****!
    Hi Mary Ann,

    I am so sorry. It's Saturday nite. I'm tired. I read your post. And I thought "OH ****!!!"

    Will it ever end??? Where is the cure???

    You are in my prayers.

    Connie
  • jazzy1
    jazzy1 Member Posts: 1,379
    #9
    paris11 said:

    AW ****!
    Hi Mary Ann,

    I am so sorry. It's Saturday nite. I'm tired. I read your post. And I thought "OH ****!!!"

    Will it ever end??? Where is the cure???

    You are in my prayers.

    Connie

    Aww!! Mary Ann
    I'm sorry to read about the this, and know nothing we say will change it.

    I'll send you positive vibes and keep you in my prayers for the next scan to be good!!!

    Cyber hugs my friend,
    Jan
  • julia12756
    julia12756 Member Posts: 22 Member
    #10
    Hi Mary Ann:
    So sorry to
    Hi Mary Ann:

    So sorry to hear that the scan was not great news!! You are in my thoughts and I hope you will receive a better report with your biopsies.

    Julia
  • kkstef
    kkstef Member Posts: 688 Member
    #11
    What a bummer!
    Mary Ann, I was so sorry to hear about the PET results. Unfortunately, I have no words of wisdom, but do want you to know that I am sending lots of positive energy your way as you deal with new jog in the road.

    You are always so methodical about your research and weighing the pro's and con's before making the decision you are comfortable with. I am betting on you again!!

    Wishing you the very best and waiting for your update!

    Karen
  • soromer
    soromer Member Posts: 130
    #12
    So sorry you have discouraging results
    However, as we know, this does not mean your condition must inevitably worsen. Improvement is possible, again and again.
    Good luck to you with your next decisions. Remember to breathe.
    Many hugs,
    Soromer/Kate
  • RoseyR
    RoseyR Member Posts: 471 Member
    #13
    Don't Give Up Yet!


    Daisy,

    A recurrence is jsut that--a recurrence, and while scary, it doesn't mean you can't recover.

    In the meantime, we're here for you.

    I can assure you that CT scans are utterly painless.

    Please keep us posted on what's next.

    Love and Hugs,
    Rosey
  • Becky444
    Becky444 Member Posts: 29 Member
    #14
    RoseyR said:

    Don't Give Up Yet!


    Daisy,

    A recurrence is jsut that--a recurrence, and while scary, it doesn't mean you can't recover.

    In the meantime, we're here for you.

    I can assure you that CT scans are utterly painless.

    Please keep us posted on what's next.

    Love and Hugs,
    Rosey

    Hugs to you Mary Ann
    Mary Ann,

    I certainly sorry to hear the nodes showing up. I had been watching the board as I knew you were going back for a checkup. I have seen several times on this board where things have lit up but it has turned out okay. Medicine is not an exact science. It is all scary but our thoughts & prayer are there to lift you up....from all over the country.

    Fondly,
    Becky
  • CindyGSD
    CindyGSD Member Posts: 190
    #15
    Thinking of you....
    Damn...so sorry to hear this. Maybe...just maybe its not a recurrence. Sending you all the positive energy I can.

    Take care,
    Cindy
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #16
    Hi Mary Ann:
    Sorry to hear
    Hi Mary Ann:

    Sorry to hear about your recent PET Scan. I would ask about biopsy all of them if they can. Also, what were the ratings on the nodes?

    My thoughts are with you for your upcoming appointment.

    Kathy
  • SuziDezi
    SuziDezi Member Posts: 25
    #17
    Kaleena said:

    Hi Mary Ann:
    Sorry to hear
    Hi Mary Ann:

    Sorry to hear about your recent PET Scan. I would ask about biopsy all of them if they can. Also, what were the ratings on the nodes?

    My thoughts are with you for your upcoming appointment.

    Kathy

    Merde alors!!!
    You have been the backbone of this discussion forum for a while now and no doubt have many sisters interested in your journey. I am definitely one of them especially since I am following a somewhat similar path. My 6th chemo infusion of the second series following lymph node recurrence is scheduled for next week - blood work dependent, of course. you have continued to say that we all know recurrence is a possibility but not necessarily an inevitability - but darn it 'sucks' when it happens!! Hopefully things will turn out to be benign. If not we know that treatment can be effective. That still gives us lots of life to enjoy.
    Our thoughts and prayers go with you on the 10th.
  • JoAnnDK
    JoAnnDK Member Posts: 275
    #18
    SuziDezi said:

    Merde alors!!!
    You have been the backbone of this discussion forum for a while now and no doubt have many sisters interested in your journey. I am definitely one of them especially since I am following a somewhat similar path. My 6th chemo infusion of the second series following lymph node recurrence is scheduled for next week - blood work dependent, of course. you have continued to say that we all know recurrence is a possibility but not necessarily an inevitability - but darn it 'sucks' when it happens!! Hopefully things will turn out to be benign. If not we know that treatment can be effective. That still gives us lots of life to enjoy.
    Our thoughts and prayers go with you on the 10th.

    rating?
    What is a "rating on a lymph node"?

    JoAnn
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #19
    JoAnnDK said:

    rating?
    What is a "rating on a lymph node"?

    JoAnn

    Update -
    Hi everyone,

    Thank you so much for your support and kind words.

    JoAnn, the rating is the uptake of the FDG (dye of whatever is used for PET scans). I shows level of metabolic activity. The higher, the worse it is.

    I met with my doctor today and he is recommending treatment now instead of waiting. In 2010 he supported waiting and watching the CA125 for a few months before treating. Interesting that my ca125 is 26 - which is within normal limits. His thinking is to nip it in the bud and knock it out while progression is small.

    Mets are in lymph nodes in chest cavity - around diaphragm - and cluster in pelvis. We are waiting for Caris metabolic profile taken from CT guided needle biopsy done last week (interesting procedure!). I'll know more mid week.

    Thank you again for thoughts and prayers.

    Mary Ann
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #20
    daisy366 said:

    Update -
    Hi everyone,

    Thank you so much for your support and kind words.

    JoAnn, the rating is the uptake of the FDG (dye of whatever is used for PET scans). I shows level of metabolic activity. The higher, the worse it is.

    I met with my doctor today and he is recommending treatment now instead of waiting. In 2010 he supported waiting and watching the CA125 for a few months before treating. Interesting that my ca125 is 26 - which is within normal limits. His thinking is to nip it in the bud and knock it out while progression is small.

    Mets are in lymph nodes in chest cavity - around diaphragm - and cluster in pelvis. We are waiting for Caris metabolic profile taken from CT guided needle biopsy done last week (interesting procedure!). I'll know more mid week.

    Thank you again for thoughts and prayers.

    Mary Ann

    Mary Ann sorry you will need treatment again
    I know you hoped you could wait a little longer. Don' t we always hope that. It is interesting that your CA125 is not higher.

    I will be interested in seeing what your Caris report indicates. How different the results will be from your tissue assays you had done. I would think that treatments you have had previously would effect the reports, but I don't know that. Diane had the Cariis studies done months ago.

    Hope you are doing okay with this decision to start treatment again. Will it be Taxol/Carbo again. Or will it depend on what you Caris report shows? When do you start treatment? You remain in my thoughts and prayers. In peace and caring.
  • jazzy1
    jazzy1 Member Posts: 1,379
    #21
    daisy366 said:

    Update -
    Hi everyone,

    Thank you so much for your support and kind words.

    JoAnn, the rating is the uptake of the FDG (dye of whatever is used for PET scans). I shows level of metabolic activity. The higher, the worse it is.

    I met with my doctor today and he is recommending treatment now instead of waiting. In 2010 he supported waiting and watching the CA125 for a few months before treating. Interesting that my ca125 is 26 - which is within normal limits. His thinking is to nip it in the bud and knock it out while progression is small.

    Mets are in lymph nodes in chest cavity - around diaphragm - and cluster in pelvis. We are waiting for Caris metabolic profile taken from CT guided needle biopsy done last week (interesting procedure!). I'll know more mid week.

    Thank you again for thoughts and prayers.

    Mary Ann

    Mary Ann
    Gosh just hate to read this one too. Catching it early as we know, is the best. I know you're a real trooper, but sure be nice to get a very long break from the treatments.....just never ends!

    We're all here for you.....know you'll still be in my prayers!!

    Big Cyber Hugs My Dear Friend!
    Jan

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