I have searched this site & I can find no mention of secondaries in ovaries -
I saw my consultant today and he thinks that I now have secondaries in one ovary. He doesn’t think that a biospy is necessary, as it is ‘probably connected’ to my primary diagnosis. It means taking me off herceptin (which has kept me stable & with few SE’s) & putting me on a combination chemo, ( I didn’t catch the names) which will be in pill format. I also have Zometa for bone mets.
Maybe I am being niave, but surely this is a huge assumption to make. Shouldn’t they do biopsy first?(Not sure how easy this would be??) My CA 125 levels are measured every three weeks, & when I asked if these were normal I was told that he had just looked at the scan and not blood - which is ‘incidental’. I know that my CA153 levels have also previously been normal, but again he didn’t know if this remains.
I am scared by this new development and appreciate that I might just be clutching at straws, but before such a huge step is taken shouldn’t we know exactly what we are dealing with? Any comments / thoughts / experiences would be greatly appreciated.
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Hi stillstanding I too have recently been diagnosed with a single met to one ovary. Private message me anytime. I’ve been living with bc mets since 2003, bone mets. After recent scans because my breast cancer tumour markers had jumped 6 (still quite low now, I have the CA15-3 markers taken which are now in the early 30’s they had been 23-25) I was told my bones were in great shape, liver, lungs all clear but was then told of this ovarian met. I am now having both breast and ovarian markers taken (ovarian markers have been completely normal) and my Onc is absolutely certain this new met is breast and not ovarian. My Mum died of ovarian cancer so I was worried at one point, not so much now, that I might now have 2 cancers. At the moment I will be re-scanned in the New Year and will be starting a new chemo then…not sure which yet. I have now researched a little on the net, I found some old bcmets.org posts useful and it appears ovarian mets from breast cancer can, fairly often, pop up after many years of living with bc secondaries.
My Onc has confirmed this too.
If you would like to keep in touch please do as it sounds as though we will be having treatment around the same time. Good Luck…xx
Interested to read your post as I phoned the BCN yesterday as I have been bleeding for a couple of days (I am 60 and def post menopausal)
and she said it would not be any thing to do with my bc and was prob stress due to recent op etc. Due to start rads soon and to take tamoxifen starting tues (6 weeks after op). I am sure she is proably right but she led me to believe that it doesn’t spread to ovaries. She reassured me but now I am not so sure.
Hi Lynni, I had been reading lobular cancer was more likely to cause ovarian mets but mine isn’t lobular. But since then I have read some old posts on bcmets.org and my Onc doctor has also mentioned odd random mets turning up in the ovaries, eyes and elsewhere after many years of living with breast cancer…so I suppose this is the case for me. I’m neither BRCA 1 or 2 positive but with hindsight I wish I had pushed to have my ovaries removed as I am ‘higher risk’ (although I only discovered this after 2008, when my Mum died 2 weeks after being diagnosed with Ovarian cancer) but everything was going so well and it was thought best to continue on the chemo I’d been started on the day after Mum died and meanwhile I was being monitored every 3 weeks…until now this had worked really well. Ironically my bones are the best they’ve been since 2003. This is a sneaky disease.
Sorry, I’m rambling, I hope YOU are keeping well Lynni…xx
Hi Smiley, thank you, I received your message…Good Luck with tamoxifen…xx
Just to give you my experience, I went to the GP with pain in my abdomen 2 years after BC diagnosis, I was sent for a variety of blood tests and an ultrasound. I saw the gynaeocologist just after the ultrasound and he told me that a suspicious growth had been found on my ovary. He then accessed my blood tests on the computer as I sat there and told me that a couple of minutes earlier he had been looking at a potential ovarian cancer, but the blood was now saying otherwise! (he hadn’t told me about his original thoughts before, so I went away relieved) He also said that Tamoxifen can cause these growths - something not many people know about! So I think the blood can be used to diagnose.
I then had my ovaries and tubes removed ( a very simple almost painless proceedure!)and when they analysed them they were not cancerous…thank god! So in answer to still standing’s question, the scan can be misleading, but do you have secondaries elsewhere, as I didn’t yet have secondaries at this time.
Take care all, Belinda I am sorry to hear of this ‘new’ met!
Hi Ladies, im in a similar boat… After having alot of pelvic pain i had an ultrasound scan of pelvis, have a large suspicious lump on my right ovary (was diagnosed with BC in dec 09,had mx,chemo,rads and then on tamoxifen) had the CA-125 test which was raised, but i know other things can cause this!! the gynae onc i saw wasnt happy with what they saw so it was planned for me to have my ovaries removed this week, unfortunately i had chest pain so had a VQ scan and have got a blood clot on lung, so that has to be sorted first!! more waiting…because they’re not sure…firstly 'IF’its cancer and ‘IF’ its secondary bc or a new cancer i had bone scan on thurs and ive got a CT scan next sat to check for spread elsewhere!! more waiting… its the not knowing thats driving me crazy, dont know if i should be worried, its soooo hard concentrating on ‘normal’ things, and just when i was trying to get my life back on track!
feeling very mixed up…
Oh Lucy what a worrying time for you. I had no symptoms whatsoever, still haven’t. I hope all will be well for you…also, long story, so won’t bore you but I’ve also had a clot to lung, when I was first diagnosed…I had 6 months of Warfarin…ok now. Good Luck…x.x.x
First of all - how dreadful for you Lucy, the waiting is in some ways the worst bit. This is an evil disease & I hope that your scans are clear.
Nicky - what a lovely piece of information. Thank-you! I am definitely going to insist on a biopsy now. You mention the presence of other secondaries elsewhere - what effect would this have on this diagnosis? ( My scan came up NED elsewhere )
Smiley - additional stress just when you don’t need it. From the research that I have done a spread to the ovaries is VERY rare - which is why I am questioning my diagnosis. I do hope that your BCN is right.
Thank-you all for posting on this thread - lets hope we can all have some good news soon.
I would have thought that the absence of secondaries elsewhere, would indicate that you are less likely to have ovarian secondaries. (sorry I’m no medic, just what I thought, I thought secondaries from breast cancer are usually in places like the bone, liver or lungs first) Mine are in the bone. As you have read that they are rare hopefully this is the case.
As for biopsy, I wasn’t offered that option, they just ‘whipped’ them straight out! My gynaeocologist used the blood test to decide that the growth was unlikely to be malignant. I knew I didn’t want to risk a pregnancy, so opted for removal.
Take care
Nicola xx (if you need any further info re experiences of removal etc please get in touch - I certainly don’t miss mine!!!)
I did have mets in lots of places, but my treatment has zapped them - so I am now NED.
I have just spoken to my BCN and she has confimed that my tumor markers are all well within the normal range. She was also suprised that my Consultant had not recommended more investigations with a gynae expert.
In short they (The oncology team) are to have another discussion about me on Weds to decide a way forward. I advised her that I would not be happy to change my medication without firm proof, so how about a biopsy? - she said that this was very invasive way of finding out and if they were going to go in there (!) they would want to whip the ovary out at the same time.
So bearing in mind you have had this procedure what do I need to know? And what should I be asking them? (Thank-you for this, it is much appreciated)
SS