Ovarian Cancer spread to spine? Does anyone have any experience with this (PetCT scan pic included)

[Yoman282]

Hello everyone, my mom has been diagnosed with ovarian cancer stage 3c last year in july and has since passed 6 cycles of chemo, she is 53. Then she took 2 months rest and done a PetCT scan, her results came and organs are all clean BUT there are 2 dots on her spine on T12 and L5. On internet I see OC can spread on spine but it is rare... Are we the unlucky ones? My moms mother had osteoporosis and we suspect and hope chemo worsened osteo a bit and its not cancer just spine damage. My mother is very tall and she worked in office all her life sitting so she always had some spine pain but after chemo she says the thoracic part hurts way more and she said a lot of her other bones hurt after chemo, the L5 where other dot is located it does not hurt her at all. Her PetCT results needed to be checked by doctor council before they could give her Avastin and they wrote they suspect metastasis on spine and just came home DEVASTATED and crying.. Her onco sent her to some kind of bone or spine scan I forgot how its called so that is our next step next week. Her Ca-125 before chemo was around 300 now its 10-12. Does anybody have more info/experience with OC metastasis on spine, I would be grateful, i have provided her scan pics for more insight. (sorry the pic have kind of bad lightning but you can see the small dots, if not I can take another pic no problem and sorry for moms hands!) Thank you all!!!

[Lyndy2]

Hi Yoman282

So her ca125 is very low but they have said they suspect mets to the spine? It doesn’t make sense to me that you could have visible mets with a level that low.

Is it possible for you to ask for a second opinion from an expert in OC?

I would push her doctors to explain in more detail what they have seen on the scan and why they have said this.

I hope you find a good way forward for your Mum ❤️

[Yoman282 in reply to Lyndy2]

Hey Lyndy2 thanks for taking the time out of your day to reply!Yeah since last chemo session in November she has very low Ca125 but only normal CT scan of abdomen was done before that so we couldn't ever know if something was on spine before this PetCT. Maybe they just want full confirmation that its cancer in spine to give her Avastin because her doc said its a really expensive medication so council of 6 other doctors wants to confirm.

Unfortunatly we can't get a second opinion from an expert but she will do Scinthigraphy soon, next week or week after so we will get results hopefully fast. We hope its nothing serious..

Thank you!

[Nov5]

Hi Yoman282,

I agree with Lyndy. Spinal mets from OC are extremely rare, especially with such a low CA125.

Sounds like your mum's oncologist has requested a DEXA scan which is done to check bone density and usually performed if osteoporosis or osteopenia is suspected.

I support Lyndy's suggestion in that you get more info or ask for 2nd opinion. Perhaps phone the Ovacome support team for their advice.

Best of luck. XX 🌹

[Yoman282 in reply to Nov5]

Hey Nov5, thanks for taking time out of your day to reply!I've also read on the internet that spinal mets from OC are rare and I couldnt find anyone on reddit or other forums that experienced it and has some more info. Yes her Ca125 since last session of chemo in November has been 10-12 we did markers every month since then.. Maybe they just want full confirmation that its cancer because Avastin is really expensive? Thats why it was sent to the council of 6 doctors because her onco wants to put her on Avastin but he does not have control of medication anymore so it needs to go to council first.

Unfortunately we cant get a 2nd expert opinion but my mom will do Scinthigraphy (found out what it's called) really soon next week or week after and hopefully we will have results asap and everything will be alright.. One can hope!

Thank you again you two have been really helpful!

[Trickysite]

IfyouAreInUK,youAreEntitledToASecondOpinionUnderNHS.SorryMySpacBarHasStoppedWorkingOnThisSite!AfterMyOp,TheyFoundASpotOnMyLiverAndIHadToHsveTwoFurtherScansAndThenTheyLostINterestI nIt.IHopeTheDotsTurnOutToBeFrecklesAndOfNoInterest.

[ClaraJones1]

I was celebrating tomorrow the 5 yr miracle of still alive with ovarian 3c diagnosis with malignant acities and several pulmonary emboli at 53yr .I had lots of back pain and neuropathy and sciatic.Got my MRI results today showing a 7 mm cyst on spine ,which I wasn’t worried about until now .Did they verify it was cancer ,I am assuming mine (which looks exactly the same )at L5 is a synovial cyst although rare .My ca 125 is very low and I am routing for that .

[Leniko]

I can only add that my OVCA metastasized to my psoas muscle on my lower back between L3 and L5 and Avastin kept it stable for years. I recently had some tumor growth activity and am now on Gemzar in hopes to knock it back and go back on a maint drug. Praying for mom! 🙏

[HealthyBeing]

Hey, my mom is also a 3c survivor. She also had osteoporosis which doctors mentioned specifically in her CT reports everytime she got it done. So I guess that might be the issue.