Mum diagnosed but advised palliative care only??

Hi after months of being ignored by her dr despite finding ascetics on her ultrascan mum paid for a private CT scan at the end of Oct. the Dt advised her she had omental caking and pererionial seeding in her abdomen and referred her to hospital under 2 week referral. She had a CA125 blood test. At the appointment she was told that she possibly had bowel or ovarian cancer and her CA125 was 350. Her ovaries in both scans seemed fine. After 3 weeks she had biopsies on the fluid and omentum. 10 days later she got asked to see a bowel specialist. He said there was no bowel involvement so must be ovarian?? He then said he had discussed the biopsy results with the gynaecologist and they advised my mum the cancer was inoperable and she needed palliative care and chemo. She still has not spoken to a cancer specialist, been told the type or stage of cancer. How can this be ok?? She has mild ascetics and some abdominal pain but otherwise seems fine. To be told she can't have survey is devasting and she seems to just accept this. Please help me give her hope does this seem normal? She is waiting for an appointment with a care plan.

20 Replies

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  • That is totally unacceptable. Yes, you should bring her to a gynecologist oncologist as soon as possible to discuss treatment options. My mother was staged 3c, with a CA125 of 2000 at the time of her diagnosis. She also had ascites, but was not deemed "inoperable."

  • Thank you, I will let my mum know that there is hope. Thanks so much for your reply x

  • Of course, I can't believe they only suggested palliative care. There is definitely hope!

    Hugs,

    Roland

  • I would strongly encourage you to call one of the nurse-led helplines... Ovacome, Target and Ask Eve all have these and I'm sure you will get some really useful advice and support... Best wishes Sx

  • Thank you x

  • Sounds like she needs to see a good gynecological oncologist immediately. Many of us had omental caking and peritoneal seeding. They remove the omentum and visible/accessible signs of cancer along with chemotherapy. This disease moves fast so time frame is important. Good luck

    D

  • Hi there, I am sorry your poor mum has been treated so badly. Maybe you need to make a fuss & demand better care. No way should they give up on your mum before even trying.

    They told me to have my birthday early because they didn't think I was going to live to see it but after treatment I have lasted 21 mouths so far! The cancer Drs also said the cancer had gone too far for surgery but after 6 chemo's I had surgery!!!

    I am glad you are on here because there will be plenty of lovely ladies & men that will tell you to fight & give you plenty encouragement. Please keep us up dated to how your mum gets on. Good luck Cindyxx

  • I would go back to your gp and ask for referral for gynae consultant asap. A second opinion is warranted. But bear in mind that pallitative means incurable but it may still be controlled from time to time by chemo perhaps this wasnt explained fully to you both, I would speak to gp and see if he has got feedback and take it from there

  • As others have said, seek out a different doctor, particularly a gynecological oncologist.

    When my mom and I first found out she had cancer, she was admitted through ER to a nearby hospital. They said no surgery for her, Just chemo. I knew this to be incorrect based on research , so when I got her to a proper gynecological oncologist, they set up a surgery date within 2 weeks, with chemo after.

    Usually only when tumors are in delicate places around vital organs is surgery usually ruled out, but that doesn't sound to be the case here. The omentum, peritoneal nodules, and the ovaries can certainly be removed, which will significantly reduce the amount of cancer in her body, and chemo will hopefully knock out the rest.

    Don't give up hope, and make sure she doesn't either!

  • Where do you live? I live in US and here the treatment your mother is getting would be classified as negligent/malpractice and is grounds for litigation!!! Please read my profile. I had the same diagnosis as your mother 20 Nov 2015. I am now in triple remission, NED. Clinical, radiological and pathlogical. I feel great! Take your mother to a gynecological oncologist immediately. As long as the doctor is an excellent surgeon your mother has a great chance of staying alive.

  • Hi Bratz - How old is your mum? I was 67 when diagnosed and still considered 'not old' and a candidate for surgery and chemo.

  • I don't understand why she hasn't been referred to an oncologist if she may have cancer. Can you make some phone calls urgently and get her referred? Some doctors call treatment palliative if it can't provide a cure, but I was diagnosed stage 3/4, with a CA 125 of 9000 nearly 6 years ago. Your mother's disease may be too widespread for an operation but that doesn't mean she can't have effective treatment with chemo. There seem to be a lot of questions to be answered, and you need a good oncologist so you can ask them.

  • Hi, I was diagnosed July 2015,inoperable stage 4,told i may have only a few months but responded quite well to chemo plus avastin,still inoperable but have good quality of life,ca125 beginning to climb again at 256 but was 3900 at diagnosis, going to have another ct scan next week and possibly back on chemo January. It's a crap disease to have but hopefully this will give you and your mum a little hope x

  • Hi Lovely and welcome,

    1) Get back to the GP and call your local oncology department book an appointment

    2) Ignore the "palliative chemo" term and get her on chemo

    3) Chemo is a waiting game we were devastated when my special person found out it hit the whole family hard, it was 6months with chemo she's still here that was March 2015 the unfortunate thing is like everything it's a fight but you can win

    If the onc put a "sell by date" on her ignore it it's all their statistics remember she's an individual the same as every other lady and there is always hope when people fight together xx

  • The other piece of advice I would give is be that really annoying itch that won't go away specialists hate that and you will get further with it 😊 Xx

  • I was told that I was inoperable when first diagnoised 2014.Two surgeons said they woulnt operate, 2 said they would.I was full of cancer.I was stage 3c.My surgeon (gynecologist oncologist) took a chance on me and got all the cancer.I am here today after chemo,debulking surgery,more chemo.I did reocur last year and went through same treatment, but I am stable again.My ca125 at the time was 1200.It is now 14.You need to find a gynecology oncologist. Don't give up..Get a second opinion..Good luck...Keep us posted..Lynn

  • Hi Bratz.I too am inoperable and on Pallative treatment.Ive been on this treatment since 2014.Eventhough I might not be operational it can be managed.Pallative care means treatment of the symptoms and cause of cancer.Having an operation to debunk is still debatable,as if late stage diagnosis there may be a recurrence.

    All in all,O.C is a bugger of an illness and because we don't tick the boxes to have O.C many G.Ps don't bother looking for it.At least now in Ireland there's a protocol for gps to follow which should I hope cut down on careless diagnosis.

  • Don't know where you are in the country,but this doesn't seem good enough, I have been lucky enough to have had private care,but a mixture of both as has your mum.

    I had ascites,but I was told my stage of cancer and had a plan put in place,which is what needs to happen with your mum now,

    Best wishes

    Carole xxx

  • My mum was diagnosed 3c with ascites in 2013 aged 77. I can't remember what the CA125 was at diagnosis. May have been around 700. She had debulking, chemo, recurrence, more chemo. She celebrated her 80th birthday in October. Her CA125 has started creeping up again after a year and four months 'watch and wait'. She is feeling OK and getting on with life. Just waiting for CT results and may need some more chemo but she is willing to have it. Good luck and I hope you manage to find a helpful oncologist for your mum. Jane x

  • Thanks all so much for your comments, this is such a supportive site. I have told my mum your stories and advice and suggested either myself or a friend go with her to her next appointment as her and my dad (69 & 73) but in very good health are not the generation to challenge doctors advice. The same doctor who told my mum she was inoperable has now just called her to book her in for an operation this Friday to remove her appendix to check this as they are still confused of the source of the cancer. It just seems to get stranger every time but I guess it's good news she is being seen! Has anyone had experience of this before or heard of just having the appendix removed? Thanks again to you all, xxx

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