Advice needed

[ORGM]

My lovely mum has just been diagnosed with ovarian cancer. She is normally fit, well and active so this has come as a huge shock to her and all the family. She had no symptoms at all! Ca 125 raised and a USS showed cysts on both ovaries. CT scan shows this is no longer contained to the ovaries and has spread onto the abdominal wall. Awaiting an appointment with the specialists. I would appreciate any advice. Thank you

[Saintgermain]

Hello,

I had no symptoms aside from some constipation which alerted my GP for me to get a pelvic ultrasound mine was in ovaries and abdomen but no lymph nodes which meant no spread into adjoining organs Until they do her hysterectomy/debulking and pathology is reviewed you won’t have the total picture there are many subtypes of OC stages and grades but many treatment options it is a very overwelming journey don’t hesitate to ask questions and seek second opinions if necessary this site is invaluable glad you found us.

[ORGM in reply to Saintgermain]

Thank you so much x

[Lyndy]

Hello ORGM, what a nasty shock you and your Mum have had! Give yourselves a little time for reeling and adjusting to all this.

I would suggest that you don’t try to know everything about OC all at once and definitely don’t google the stats… they are all out of date (I am living proof).

You just need to deal with the process of diagnosis and getting a plan together. Although you kind of know what you are dealing with, there are a few hoops to go through, tests and measurements before they will say ‘right this is what we are going to do’. It takes time and can be frustrating.

The good news is that there is a gold standard treatment for ‘first line’ patients, tried and tested, that the vast majority respond to very well.

Yes there are side effects but her team will be very experienced at mitigating them….she is likely to feel tired.

You and your Mum aren’t going to have the summer you thought you had ordered but there’s lots of reason to be optimistic and her good health up to now will help her cope with the treatment xx

[ORGM in reply to Lyndy]

Thank you so much x

[ORGM]

We are trying to remain positive and know we are only at the start of this journey, we have a long road ahead. Awaiting an MRI scan result as well due to something on the liver possibly. Hoping this isn’t the case, terrified as to what this may mean. Hoping to have an appointment next week and hoping lots of options for treatment. Thank you xx

[SopSinger in reply to ORGM]

I had "something" on my liver. No-one ever decided what it was and it clearly wasn't cancer, as I'm still here 17 years later, no recurrence. Try not to worry about every detail, there are lots of red herrings that can come up during the diagnosis.

[ORGM in reply to SopSinger]

Thank you for your message x

[Trickysite]

OC is a deceptive little beastie and often gives no symptoms. I didn’t have any and felt a very well lady. I am 2 years since diagnosis and have just returned from a Coronation Cruise, lucky me! So there is life to be had. I am 4b, treatable but not curable. After my op, they thought there was something on my liver and scanned me twice and then lost interest in it , so I class it as a freckle. I hope your mum’s liver is the same. Modern medicine is a miracle so hold on to hope. Love, Emma xx

[ORGM in reply to Trickysite]

thank you so much for your lovely message. Trying to remain positive but it’s hard isn’t it. Appointment next week and will hopefully have mri results and a management plan. Really appreciate your stories of your own personal experience. Thank you xx

[Irisisme]

Hello ORGM,

It’s often the way with OC that you get few symptoms and they are easily missed. I only had a bit of constipation too and am thankful to a GP who recognised the possibilities.

Your Mum’s general good health will certainly help her, there will probably be an operation and if one isn’t offered a second opinion should be sought.

You have already had good advice about Googling - it can help with translating medical terms but prognoses are well out of date.

Also, the possibilities of what might happen during an op are always worse case. I was told I’d likely lose my spleen, but I didn’t. I didn’t have a stoma as expected because there was too much ‘seeding’ all along my bowel - sounded awful but that was January 2017 and I’ve had a great life since then!

The waiting is always tough and it can be hard to carry on as normal while waiting for things to happen. There are often routes to some counselling for patients AND their carers (that’s you) which can be useful. I don’t know where you are so don’t know what might be available to you both.

I’ve just finished 4th line (courses of chemo 2016-2017, 2018, 2021and this time 2022-23). I had lesions on the capsule of my liver which were initially removed and I hope your Mum’s liver is no worse. If there is anything IN the liver make sure your oncology team have access to a liver surgeon (and check that her oncology surgeon is truly experienced). I do now have lesions in all lobes of my liver (inoperable) but the half way scan showed reduction and I will have another CT scan by end of May. I’m then taking part in a local community event and then I’m off to Spain to see my sister - even though the little bu**ers may still be there! Waiting to find out 😏

It can be a tough journey but there will be highs as well as lows. Just make the most of life with your Mum and make sure she carries on with her exercise and holidays etc (plans may have to be changed but do still tell her to plan her future activities). Get decent medications that work for her, tell her to insist they are changed if she gets bad side-effects. Decent laxatives that suit her, pain management if she needs it etc.

Please let us know here how she’s doing and I send you both Good Luck and a hug,

Iris🍀🤗

[ORGM in reply to Irisisme]

Thank you for your wonderful advice really helpful. Have a wonderful holiday in Spain and please keep us updated on your progress. The waiting is agony and so hard to carry on as normal but we are trying! Thank you and take care xxx

[ORGM]

Just a quick update and would also appreciate any advice.

My lovely mum has met with the Consultant who reviewed her images. Ca 125 was 239. MRI liver normal which was great news. However, they are now requesting tumour markers for the pancreas and liver along with a biopsy of the peritoneal mass. The Consultant stated that he only dealt with facts and would review my mum with all the results in a couple of weeks. Waiting is just horrendous and my mum has become very anxious. I got the impression that he doesn’t think the ovary is the primary although he didn’t say that. Mum has no Ascites in the abdomen which he would expect to see and still has no symptoms. She had cysts in both ovaries and a peritoneal mass with what he described as lumps in the cavity. Mum has had 4 UTI’s in 5/6 months and slight discomfort with these but nothing else. I would appreciate any advice from anyone with similar experience. Thank you xx