CA125 plus MRI = trouble (despite contrary advice)

[Irisisme]

Hi All, this is from the Uk - good old NHS!

My positivity is slipping! No, I WILL keep a PMA😌 I’m off on holiday soon 😁 but….

The story so far is too long - briefly, 4th line finished end of May. Just got blood results and CA125 has jumped from 23 to 293!

Now, the midpoint CT scan showed partial response. After chemo the radiologists couldn’t get a vein so CT was w/o contrast but showed “as far as can be seen w/o contrast” disease was “grossly stable” - BUT report was vague and liver lesions couldn’t be measured. I asked my Oncologist for an MRI and he wouldn’t, I asked if he’d refer me for consideration of resection and the Royal Free wanted an MRI (go figure!) - the MRI not only ruled out resection but reported “extensive bilobar hepatic metastatic disease” and one lesion measuring twice the size of the same one on the midpoint scan.

What was my oncologist’s response? “You must compare like with like”, fair enough but to ignore the MRI is somewhat bold, don’t you think?

I asked for a CT scan WITH contrast (I wasn’t offered it but he reluctantly agreed) and that’s the next step. I’ll see what Oncologist says after that but I can sense a 2nd opinion in my future!

What options have you all been offered. Maintenance? Immunotherapy? Trials? Etc etc (I’m BRAC -ve). Just wondering what I could ask for. Also, what’s the best place to go for a 2nd opinion? I’m in North Essex.

Well, I’m in touch with my local Hospice - they are marvellous 🤩 and I do have several short breaks planned - I’m still going to enjoy myself☺️, but I can’t deny that I’m worried.

Thanks for reading this, sorry for rambling. Please let me know of any options you can think of.

Iris😬

[delia2]

Hi. Sorry to hear all this but if I were you I would aggressively pursue a second opinion. I’m in the US but from what I know I’d go for the Royal Marsden or Christie. I think they sometimes use cyber knife on the liver. You could call Ovacom for advice. By all means pursue the holidays!! Xx

[Irisisme in reply to delia2]

hi Delia,

Thank you 😊

The Marsden is a possible for me. Christie’s is too far. I may be able to see a hepatologist at Addenbrooke’s - I’m certainly not ready to give up yet!

Yes, we all need to grab opportunities when & where we can; I’m just going to have a few days bathing in Nature ☺️

[Caleda4]

Oh dear, I don't have contrast as am allergic to it. You could have had a PET scan. Dr Banerjee, is at the Marsden and very good so I have heard. I have had 3 lines of treatment,and due for another PET scan on 14th of this month. I definitely have progression, with a para aortic lymph node. Have to wait to see what happens next. I have done a year so far after last lot of chemo. Definitely don't give up. Enjoy your holiday. Xx

[Irisisme in reply to Caleda4]

Another vote for the Marsden! Thank you Caleda4, and I do hope that things go well for you. I don’t think my current oncologist would have agreed to a PET scan, but now my chemo unit are going to insert a cannula before I go for a CT scan, so I will get the contrast dye next time.

Good Luck to you and thank you for replying,

Iris 🤗

[delia2]

Also, Iris. You might think about getting a port. It means no more searching for veins. It’s a bit of a procedure but once it’s in it’s no bother. They’re routine in the US but don’t seem to be in the UK.

[Irisisme in reply to delia2]

That’s a good idea too. I will look into that 👍😊

[SopSinger]

Second opinion from the Royal Marsden or Addenbrookes. Your oncologist can refer you. I hope you get some clear answers soon, but make sure you enjoy that holiday first! Sending hugs!

[Irisisme in reply to SopSinger]

I may go to Addenbrookes, I think.

Thank you 👍😊

[SopSinger in reply to Irisisme]

Wishing you all the best!

[PlantPower]

Why don't you ask your oncologist for a PET scan? Then you will have further info to go forward for a second opinion. However, you could get a radiologist or one of the chemo team to put in a cannula before you go for a CT. I wish you well, keep us posted. xxxxxxxxxxx

[Irisisme in reply to PlantPower]

Yes, that’s what I have done, I asked for a cannula to be in place before I go for my CT scan tomorrow. 👍😁🤞

[PlantPower in reply to Irisisme]

Excellent, I hope all goes well for you. xxxx

[Ruebacelle]

Hi from paris. I'm in 9th year of stage 3c Metastatic ovarian cancer had remission one year the rest on the line cept for 4 months oral chemo. Now every 2 weeks. What I found important was doing your own research, staying up w latest trials etc. Have to have confidence in your onc team and clinic. If you feel you need something they aren't doing press them. You are the client. They are there to help you. Hugs from paris

[Irisisme in reply to Ruebacelle]

Thank you Ruebacelle.

I am checking out what trials I might be eligible for🤞🤞 but it’s so frustrating not getting the info from those who are supposed to be on my ‘team’. I will find away through this! It’s so good to have the support here 🤗

[lesleysage]

Hello Iris,

We met some years ago at an Ovacome Members Day, I think? I took 'my' second opinion in 2013 with Prof Christina Fotopoulou at Queen Charlotte after Addenbrookes had declined surgery - she and her team removed both tumours and I've been clear since. Even though yours may not be suitable for surgery, perhaps the team, as a whole, will feel well placed to investigate?

I'd also back a port-a-cath once the veins 'give up' on us. My husband's work health insurance paid for mine to be done (in 2013) so that I could keep swimming throughjout chemo. After chemo concluded, my GP decided to "learn to do a nurses's job" as part of his Continuous Professional Development (CPD) so he could flush it out every 6-8 weeks at the surgery and hence save me the one hour drive each way to Addenbrookes, where I'd returned for chemo after Prof Christina's successful surgery. After 5 years of no recurrence, it was removed in 2018.

Like delia2 suggests, the Ovacome team, once you've given them all the detail, maybe able to guide you to the most appropriate team for your circumstances.? Nothing to lose by asking. I have found asking questions helps calm down the worry as I am able to "size up the monster under the bed"!

Warm wishes and sooo pleased you're not ready to curl up your toes...keep enjoying life. x

[Irisisme in reply to lesleysage]

I think you’re right, lesleysage, and that was such a good day. I think Ovacome are trying to get another Members Day arranged.

I loved reading your story, it gives me hope. The Prof has been mentioned many times here. I am going to wait for the CT scan results (the scan is tomorrow, with the chemo unit inserting a cannula first). I’m also asking for a port for the future.

Thank you,

Iris 🤗

[Wirralian]

Hi

I have no personal experience of the following surgical oncologist but several people on here have mentioned her. Personally I’m keeping her details for future reference should they be needed

Christina Fotopolou = surgeon at a Imperial college

[e-mail]

[Irisisme in reply to Wirralian]

Yes, I’ve heard of her too. I have a CT scan tomorrow so I will wait to see what that shows and what my current oncologist says.

Thank you 😊

[meadowgirl]

Hi Iris

My recent contrast CT showed NED so was sent for MRI, also NED but my CA125 has more than doubled so my oncologist has referred me for a PET scan as he says it shows more and more accurate. I was fortunate to have my initial surgery at the Marsden but Hammersmith Prof Fotopoulou would be my second choice, I live just outside London. Hope you get some satisfactory answers.

[Irisisme in reply to meadowgirl]

Hi Meadowgirl, sounds like you have a really helpful oncologist, I hope the doubled CA125 has an innocent cause 🤞🤞

My oncologist would never agree to a PET scan. I had a CT scan today and even my chemo unit had trouble finding a vein but they managed to get a cannula in for the contrast dye, we discussed a port!

I guess we both have to cope with waiting for results 😬

Good Luck 🍀🤗