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PET Scan results - Several nodes lit up again!

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

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

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

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's picture
snowbird_11
Posts: 160
Joined: Oct 2011

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
Posts: 564
Joined: Jul 2009

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's picture
Ro10
Posts: 1473
Joined: Jan 2009

Hope your biopsy gives you good results. you will remain in my prayers. In peace and caring.

Double Whammy's picture
Double Whammy
Posts: 2333
Joined: Jun 2010

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
Posts: 132
Joined: Oct 2010

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
Posts: 132
Joined: Oct 2010

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's picture
jazzy1
Posts: 1387
Joined: Mar 2010

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
Posts: 22
Joined: Jan 2012

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's picture
kkstef
Posts: 706
Joined: May 2008

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
Posts: 130
Joined: Mar 2011

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
Posts: 464
Joined: Feb 2011

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's picture
Becky444
Posts: 29
Joined: Jul 2010

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's picture
CindyGSD
Posts: 191
Joined: Aug 2011

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's picture
Kaleena
Posts: 1213
Joined: Nov 2009

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's picture
SuziDezi
Posts: 25
Joined: Dec 2009

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
Posts: 276
Joined: Jun 2011

What is a "rating on a lymph node"?

JoAnn

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

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's picture
Ro10
Posts: 1473
Joined: Jan 2009

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's picture
jazzy1
Posts: 1387
Joined: Mar 2010

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

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Sorry to hear more treatment is on the horizon for you as well, Mary Ann. I think it will be very interesting to see how new Caris results compare with your prior. Has your ca125 been a good monitor previously? I have been curious as to how much higher mine has been with recurrences than prior -- only in 90s before original debulking surgery and now 90s would be fantastic. This is such a challenging disease - and not a challenge that we want :(

At least you are getting it early which will hopefully give you another long break, a very long break!

Sending healing thoughts your way.
Annie

Tresia23's picture
Tresia23
Posts: 75
Joined: Dec 2010

Hi Mary Anne, I have only just started reading posts again and I want to send kind and loving thoughts your way while you are waiting for biopsy results. I always find something helpful in what you write on this discussion board. I am so full of admiration for all the beautiful, courageous women who are part of this community. Sharing makes things more tolerable and less wounding somehow. Georgia

Tresia23's picture
Tresia23
Posts: 75
Joined: Dec 2010

Hi Mary Anne, I have only just started reading posts again and I want to send kind and loving thoughts your way while you are waiting for biopsy results. I always find something helpful in what you write on this discussion board. I am so full of admiration for all the beautiful, courageous women who are part of this community. Sharing makes things more tolerable and less wounding somehow. Georgia

Becky444's picture
Becky444
Posts: 29
Joined: Jul 2010

I have been waiting to see how you can out at the doctors. I am sorry you have to head back to treatment but if the spots are small, maybe they can get you back to NED sooner. My thoughts and prayers are with you each day.

Sisters three's picture
Sisters three
Posts: 157
Joined: Nov 2012

Sounds like your Docs are ready to get you back into NED fast.  I'm sending good thoughts your way. I'm thinking ice cream should be on your diet today!

 

Lisa

Sisters three's picture
Sisters three
Posts: 157
Joined: Nov 2012

Ooops!

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

The CSN site allows old threads to be reactivated once someone posts again.  Unfortunately like on this one, some SPAM got in and reactivated it. 

Just a nuisance.  When you see obvious commercials just flag that post and eventually they will be deleted.

Thanks though for your continuing good wishes.  Mary Ann

TAyers's picture
TAyers
Posts: 47
Joined: Aug 2012

Mary Ann,

I am sorry that you have had a reccerence, its sounds like your doctor is on top of it and doesn't want it to go any further. Thank goodness for checkups. Thats my fear, I am just finishing my last internal today and I know my ca-125 marker is not a good marker for me. If they find a reccurrence it will probably be through a catscan or symptoms. How did you get your insurance to pay for a petscan? I will be praying for you.

Tami 

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