My mother was diagnosed with stage 3c PPC over 3 years ago. She had surgery involving a total abdo hysterectomy, removal of omentum and a bowel resection. She also had 6 rounds of chemo in total. Her ca125 level at the time of diagnosis was about 350. She responded very well to treatment and has been in remission for the past 2 1/2 years with ca 125 level staying between 0-10. Less than 3 months ago her ca125 level rose to 24 but oncologist said no need to worry as still a normal level. However now level has risen to over 1500 and in such a short period of time! We are shocked as she has been feeling so well! She is meeting with consultant this week and will be booked in for scans. We know this means a reccurance but are very worried about the level rising so quickly and being so high.
Obviously won't have any answers until CT done. Has anyone else been in the same boat and how bad was it? Where are the most likely places for this cancer to present again?
I'ld like to be as prepared as possible so I can be a better support for my mother.
Sorry for the long post!
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Puggle
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HI Puggle, well your Mum did get a long remisson first time around so hope if she needs treatment now she will equally respond. However, the ct scan will determine whether she needs treatment or not. Sometimes the CA 125 can be unreliable as it may increase for other reasons than OC. It is a more reliable tool to monitor your bloods while on treatment. I would however suggest you ask for the ct scans to be done as soon as possible due to the worry factor. Then when the results come, your mothers oncologist will decide what treatment she needs if any. It is good your Mum is feeling well in herself at the moment and sometimes the docs do adopt a watch and wait or they may decide to give treatment when the patient is clinically well as you tolerate it better. A lot of conjecture I am afraid but in reality dont let your mind run away until the cts scans and until the results are back. I would advise that someone be with your mother when seeing the consultant this week as two heads are better than one. Wishing you and your mother the best
Thanks for your reply Suzuki. My dad will be with her for this appointment and I will go to for when she gets scan results. I'm a nurse but don't have any oncology experience. I did go to most of her appointments the first time she went through this as I can then explain to mam what the doctor was saying. She tends to always focus on the negative news or just picks up one point the doctor mentions and doesn't hear the rest. She is quite an anxious person in general. She prefers not to do any reading on the topic and just goes with what the doctor says. I prefer to have all the info and facts as it helps me to prepare and cope better. We have a big family so she has lots of support but being a nurse I tend to hold it together better than the others. With her anxiety I don't think she would be able for the wait and watch approach so am hoping if there is something happening they will offer her treatment. Thanks again
I'm sorry to read this, it's a big shock when it happens quickly. I'm in the same position after three years clear. Waiting to find out if it's a recurrence. I did however do some research and read that a rise into the hundreds and thousands can be thyroid function. Has she had a test?
Hi lily-Anne, thanks for your reply. That's interesting about thyroid function. She has bloods taken every 3 months since remission and they usually test everything but this time the nurse didn't bother testing for anything other than the ca125. I'm sure they will do the routine bloods now that ca125 is raised.
Sorry to hear you are going through this too. The not knowing is the worst part. I hope your news is good. X
I am in a similar position- I was diagnosed over three years ago, in January of this year my CA125 was 7, then at my 6 month check in July it was 474, Whilst waiting for scan results I had another appointment to see my Oncologist and it had shot up again to 820. I also feel incredibly well at the moment! I was really worried that a rapid rise would mean a rapid development of disease. I spoke to a specialist nurse who reassured me not to focus too much on the numbers- some people are just better "secreters" than others ( her words!) and that the scan would identify what was going on. I saw my onc just over a week ago- I have three small tumours less than 2 cm, and very small spots scattered over my peritoneum and what's left of my omentum- no involvement of any organs or lymph nodes. To be honest I was expecting much worse. The onc said I could start treatment straight away or he was happy to wait a few weeks if I had anything specific planned. We did have a holiday to Kefalonia planned for September but to be honest I would not have felt confident going, so we cancelled and I start treatment next Monday. So my advice to you would be the same as the advice I was given- try not to focus on the number and wait for the scan results. There is probably a specialist nurse at the hospital you can speak to, they are really helpful, or try the nurse helpline at Ovacome- they are also incredibly helpful. Good luck and let us know how your mum gets on
Hello Jan how are hope yoy are OK my mother is suffering from recurrent ovarien cancer Dr started lipodox but after 1st chemo her ca125 increase rapidly from 390;to 940. Dr say its to early to predict whether lipodox working or not we have to wait for 3 more cycle
Hi Jan, thanks so much for replying and so sorry to see that you are going through a recurrence too. Your post has been very reassuring. I really hope my mother's scans show a similar result as there is no doubt that the cancer is back just a question of how bad! She had her appointment with her Gynae surgeon today. He just reiterated what we already knew but hearing it from the doctor has hit both my mother and father hard. I think they were both in a bit of denial the past few days waiting and trying to convince themselves that there was a mistake with the lab test! I guess this is a normal reaction. On the positive side he did a quick ultrasound (probably not the most high tech machine) which showed that there was no fluid built up and he couldn't make out any tumors. Am hoping this means they are too tiny to detect by u/s. She will have a CT within the next few days. He also repeated her bloods to double check the reading.
He did say it's not a question of 'if she has cancer but where?'. This is what's really panicking my mother. A close friend of hers recently passed away very quickly after a pancreatic cancer diagnosis so she is now terrified it might be in the pancrease. It's going to be a long few days ahead waiting for results!
My parents also had holiday booked for September but mam has already said she won't be going if it would delay the treatment.
I will be thinking of you next week. X
Hi Puggle. I was first diagnosed 3 1/2 yrs ago at 3C and now in remission (6 months) for the 2nd time. I've been reading the posts above. Pancreatic cancer is one of the worst you can have for long survival. But if your Mum's OC has returned, any growths she has are almost certainly all Ovarian cancer, regardless of where they are growing. When mine returned, it was in a breast and also on my liver but tests showed that they were all OC.
My understanding is that a CA125 is a cancer marker for OC, not for other cancers - other readers may be able to clarify that.
Like your Mum, I used to be an anxious worrier but strangely my cancer diagnosis seems to have changed my attitude: I now have a much more accepting attitude - get over it and get on with it. Mind you it was a terrific shock initially, as I'd been fit and well all my life and couldn't believe this had happened to me.
My understanding is that the cancer doesn't return very aggressively but once returned, it's inoperable but not untreatable - there are lots of women on this site who've had several recurrances and still going strong. It will likely have spread to other sites. My onc wanted to go for the watch & wait approach but, because it had already spread to new areas, I was concerned that it would only continue to spread. He said that since I was feeling so well, it was a shame to resume chemo which would make me unwell. Also, he only has so many weapons in his armoury to treat it and didn't want to use them too soon. So it's a dilemma whether to go for the watch & wait or if chemo should be started sooner rather than later. In my case it became an easy decision, as a trial (Avastin) was starting at my hosp & we were all eager for me to go on it. Good luck to your Mum and your family. Best wishes. Pauline
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