I don't write on here often but visit daily to see how everyone is doing.
My mum finished first line treatment on Dec 27th (she had her debulking ok 23rd nov) following a diagnosis of stage 3c OC/PPC in June 2018 (they can't decide which) she is on avastin until around Sept.
Anyway her first appointment with her oncologist following her op had said that the op had been successful and he wasn't expecting to find anything on the scan. She then went to see him last week and he mentioned that the lymph node in the chest is still enlarged (which apparently has been there since her first scan, that we can't even remember being mentioned) but within a normal size, there's "bits" showing which he thinks is scarring and there's a small amount of fluid in her stomach, which he said is normal following an op. Her CA125 was over 2500 at time of diagnosis and although it is dropping it's still not quite in the 0-35 range (she did have a water infection and her op wound opened and had to be packed and had just closed prior to this but I don't know if this would have an impact at all).
She isn't back to see him until 5 weeks time and I know we should have asked questions but we were both so distracted by the student sitting clicking her pen we kind of said see you in 6 weeks and left.
Sorry it's such a long winded message and my mum knows she should be thankful but she's a little worried about what it all means.
Sorry once again for the rant and I hope a few of you managed to stay awake lol
Sarah xx
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sjg81
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So sorry that such an important appointment was so unsatisfactory.
Also sorry that you have more work to do.
You now need to talk to your CNS, or your special Oncology nnurse to arrange another appointment at an earlier date, but if you cannot get this, you can still ask your GP for another CA-125 test now and then another before your next appointment.
That’s what I do and it really helps, as the CA-125 is a good marker for me.
Don’t accept no for an answer.
Try to get a copy of this last scan report, too.
You need to get a better idea of what is happening to your mom.
Thank you for replying. We normally get a copy of the letter that the Oncologist sends to my mum's doctor so at the moment we are waiting to see what that has to say. It's a nightmare trying to get hold of my mum's CNS but she is going to give it a go. She gets her bloods checked every 3 weeks prior to her getting her Avastin so we can ask on Thur what her CA125 is then.
She had her 5th chemo two weeks after her debulking op and her wound was still open during both the 5th and 6th chemo so I'm guessing that hasn't helped her CA125 levels either. He did say that unless she has any symptoms or her CA125 starts rising she won't be scanned again until sept/Oct when the Avastin ends so I'm hoping that's a good thing and I'm just being paranoid.
Does your cns have a direct phone number? Mine does, though she's not been in the office when I've rung. But she has an answerphone, & if I leave a message she'll get back to me. Di
My mum has been a bit scattered around a few different hospitals (for her chemo/surgery/appointments etc) and has a few telephone numbers but now we aren't sure which one is for which hospital 🙈 we'll just try them and see which one replies.
Thank you for replying. As I said to Laura the Oncologist won't be scanning her again (unless she has symptons/her CA125 rises) before at least Sept so in my head I kind of think if he was worried about anything surely he would have her scanned again before that. Her bloating and ascites was her biggest indicator so I think him saying she had fluid in her stomach is what's worrying her the most.
Apart from her Avastin that she's currently getting every 3 weeks he didn't mention any other treatment so it probably is just us worrying for nothing but it's something you can't help doing.
Thank you again for replying and I hope your mum is doing well
All this murkiness is very distressing and having free fluid in her abdomen is worrying.
When I had my recurrence, the first indication was a rise in my CA-125. I hoped it was a glitch, but having to wait 6 weeks for a scan was too much for me and I got two follow up CA-125s at my GP’s , which showed the continued rise by doubling, proving that I was having a recurrence.
My scan showed the cancer on my peritoneum, but also a small amount of free fluid in my abdomen.
I still felt great and not at all the way I felt when this thing started, with a bloated belly and chest fulll of ascites.
Nevertheless , after 3 months on my new treatment of Carbo and Caelyx, the fluid disappeared and the cancer is barely visible and my CA-125 was down to 27.
So, I guess I am saying that I agree.
That fluid is suspicious and further blood tests are indicated and if her CA-125 continues to rise, a new scan is called for.
My opinion.
But I wish you success with finding clear answers,
Her last CA125 was done on the 17th Jan and it is going down but she's getting it done again today as she has her Avastin tomorrow.
She is worried about the fluid as that was the biggest indicator before diagnosis and the ascites was so bad she had to have a permanent drain fitted for around 4 months. She did mention it but her oncologist did say it's not unusual considering within the space of 8 weeks she'd had her surgery, her last two chemos, her problem with her wound and then the scan.
I think my mum's going to contact her oncologist secretary and see if she can get a copy of her scan report.
Did you have a CA125 at every follow up as a routine or did you have to request it? At my hospital they ‘don’t do’ CA125s (because of a research study ages ago saying it made no difference).
Also no scans unless symptoms after FLT.
But....if you had no symptoms, you’d never have known.
And YES! We would never have known anything was wrong as I had no symptoms. In fact, I felt fantastic and was totally stunned that I was having a recurrence.
Even after the 6 week wait before my scan, I still felt wonderful, while my CA-125 kept rising from 69 to 473 in those 6 weeks (pre-checkup it had been 11).
I disagree heartily with the convention of watch and wait.
I read toomany stories that go like this:
“I didn’t have any symptoms, so my doctor said we should just watch and wait. It was lovely to not have any treatment for a year.
Yesterday I got my scan results back and the cancer had come back. It’s inside my liver and bowel and they said they can’t operate.”
I am not waiting for my cancer to invade my organs or my lymph nodes.
Fortunately, my consultant agreed, so I started treatment immediately after my scan.
Also, I insist on knowing my blood results and I get a copy of my routine prechemo bloods, as well as my scans.
I want to know everything and I try to keep myself informed.
If anyone asks about some aspect or new treatment about this disease, I look it up.
I think it is useful to know that radiographers are very wary of giving false all clear readings and will pick up tiny details which could be something not nothing. We want a clear ‘yes’ or ‘no’ response and get upset. It sounds to me that your Mum has done pretty well so far and that as she recovers further the results will be even better. I would ask the CNS to go over the results or if you can’t get her ask the oncologist secretary for someone to ring your Mum xx
Thank you for replying. It is true we do want a clear yes or no but I do think rationally that if they thought it was anything to bad they would be doing further testing/an earlier scan etc so hopefully fingers crossed it's just us being super paranoid but with this sh**y disease you can just never tell.
Thank you again for replying and at least you managed to read my full rant without falling asleep lol
I was diagnosed in June 2016 stage 4 high grade serous and had debulking in Nov 2016 followed by a year of Avastin so I’m a couple of years ahead of your mum.
Just wanted to mention that I had some fluid on my scan after my surgery and was also told this can be normal after such a big surgery. It takes time to all settle , my CA125 continued to decrease after my last chemo whilst on the Avastin (Was 3880 now 8)
So sounds like your mum is doing well. I’d definitely agree that you should get a CNS nurse to talk through your mums results to reassure you all. Copies of scan reports are good to have but do often need a medical person to explain. I remember going into melt down when I got an emailed copy of mine as we thought I’d got spread to a number of lymph nodes when in fact it was actually saying the opposite!
I hope you get the reassurance that you need so that your mum can feel positive that she is on the road to recovery. Make sure you also look after yourself too. I care for my mum who has a number of health issues and know how hard it can be both physically and emotionally 💜
Thank you for replying. It feels like I know you all as I follow you all to see how your doing 🙈
I'm so pleased to know you are still doing so well and I keep everything crossed that long may it continue. I actually told my mum about your story because she too had a lot of ascites and that's what finally made the to think it could be more than IBS.
It puts my mind to rest a little that you too experienced a little fluid and the lymph node my mum has hasn't changed apparently since her first scan since June.
I think the CNS is the best way forward as I think the report would confuse us even more.
Thank you again for replying and I'm pleased your doing well ❤
My mum finally got her report from the consultant meeting. Her CA125 has dropped down to 50 now and it does say she has some strandling on the peritoneal showing in the CT but it's unclear whether it's from surgery or any beasties remaining. It does state that she won't be having another scan until the end of her avastin in Sept unless her ca125 starts rising or she gets symptomatic. So let's hope and pray and keep everything crossed 🤞
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