Looking for advice

[RoseyH]

Hi, my mum has recently been admitted to hospital with blood clots in both legs and both lungs; fluid in her abdomen & lungs which has cancer cells and a 14 cm "mass" which they have now advised is a polyp. Although they have not found her primary cancer it is likely to be ovarian or in her uterus & she has high levels of CA125. I have been checking on the internet and "malignant" ascites is said to have a poor prognosis ie only a few months. What i wanted to know is if anyone on here has had advanced (stage 4) ovarian cancer, and had malignant ascites & survived it? For the past few weeks I have been pushing for treatment for my mum but today she was very week and tired and I hope i have not been naive by thinking that treatment/positive outlook will help her. if anyone has any info I would be very grateful so i can share it with mum to give her some good news thanks Rosey x

[Soos24]

Hi Rosey, we have been through a very similar situation with my mum, she was finally diagnosed after I got her into A&E about 13 months ago, she had a hugely bloated abdomen and CA125 levels of over 19,000. We were fearing that we wouldn't have very much longer with her. It was inoperable because she has fibrosis and the doctors said that the surgery would leave her bed bound for months if she even survived it. CT scans showed nodules elsewhere including her omentum and lymph nodes.

She has had 8 courses of chemo, which finished over 6 months ago. She managed them without many problems, just tiredness and weakness really. Throughout the whole treatment she has been totally positive, never wanting to hear any kind of prognosis, even the MacMillan nurses have given up visiting because her mental state has been so good! When she finished chemo her CA125 had dropped to about 400. Three months later, in June this year, they were 126, and two weeks ago they had dropped still further to 44.

For someone who is not particularly well or mobile she has a good quality of life but I really believe it has been her unwillingness to accept a terminal diagnosis that has helped her through. She is not on any treatment and hasn't been since March. She just has to go back to see the consultant every three months. So I do hope this will give you and others some hope - yes be positive, it really works!! Mum is 75.

Best wishes to you and your Mum and please do share our news xxxx

[SandyL]

Hi Rosey,

I'm sorry to hear your mum is so sick. When I was diagnosed over 12 years ago, I had all the symptoms you mentioned, malignant ascites, blood clots in both lungs, Ca 125 of 9800 and a blood clot in my leg that developed even while taking Coumadin. I also had a Stage 1V diagnosis. Due to the embolisms I couldn't have surgery, so had 3 chemos before surgery, then 6 chemos after surgery.

I was 53 at diagnosis, I'm 65 now and have enjoyed a 12 year-remission without recurrence. Please tell your Mum that there is always hope. I was given the 'get your life in order' talk, and here I am still here and kicking! When I was first diagnosed with Ovarian Cancer I did exactly what you are doing, I searched for others with the same diagnosis as I had, because I needed to find just one person who had survived for longer than two years. I joined the ACOR discussion group for women with Ovarian Cancer and I found several women "in remission". That's all I needed to know. I thought if they survived and thrived, then I could too.

The ascites almost disappeared after 3 chemos - it was noted on the surgery report that there was a small amount of ascites still there, which was quite incredible because my stomach was so huge I looked 10 months pregnant and had to get my husband to fasten my shoes. I know how lucky I am.

Good luck to you and your Mum.

Sandy.

[Hidden in reply to SandyL]

Sandy,

Wow! What a story - you are an amazing encouragement to all of us.

I'm starting the day really chuffed because of your story.

Thanks,

Isadora xxx.

[Hidden]

Wonderful Soos! Well done your Mum.

Rosey, Don't be oppressed by the stage/extent of the disease, the response to treatment depends on the individual, and with luck your Mum will respond well and feel better and better. It's so easy to feel the weight of the stats, etc - but ultimately, we are all different. Keep positive and help her through.

You are brilliant!

Isadora.

[Lindy4]

The value of this website forum constantly shows and Sandy and Soos are good examples. A personal thank you for posting your uplifting posts which are just what Rosey needed to hear and I hope has helped her Mum. We could all get weighed down in a negative spiral of thought with the stages and stats of this disease but we are all individuals and there are no stats for individuals .Most stats are at least 3/5 years old anyway. Your stories have put a great balance and perspective to that. I'm sure they have given a mental"lift" to many reading this today and like Isadora, it has started my day on a positive note.

Rosey take a lot you need to know from these stories and wishing your Mum a better journey from now on

[Hidden]

Just like to say what "BRILL" news this is, and like Isadora this has given me hope for today.

I am off for a ct scan this aft as my count has gone up from 18 to 55, and they just want to make sure that there is nothing going on !!.

There was nothing on the last ultrasound scan, so its fingers crossed.

[Hidden in reply to Hidden]

GOOD LUCK!!

xxxx

I.

[Hidden in reply to Hidden]

Thanks Isadora. x x

[Soos24 in reply to Hidden]

Good luck kefi, rooting for you xxxxxx

[Hidden in reply to Soos24]

Thanks Soos,

Will let you all know after next fri (aah) !!

Luv to mom, keep it up you are an inspiration to us all. x x

[Eleni]

Sandy and Soos - bless you! Your stories are inspirational and prove the value this website has for us all.

Thank you both

Eleni x

[RoseyH]

Hey everyone, thank you so much for your words of encouragement and personal stories of survival against the "odds". I should give you a bit more background a) because it is great to be able to share our struggle with fellow fighters & b) because i hope what we have experienced over recent weeks will help those who might be reading this and going through the same thing. Firstly, my mum suffers severe agoraphobia and for the past 10 years has been unable to travel further than 200 yards from her home. For much of the summer of this year she had a low appetite so that was probably the first symptom. At the start of Aug she began getting sever constipation and we had her on a high fibre (and pretty boring) diet. In mid Aug her abdomen became bloated (the doctor put this down to incorrect thyroid medication). In late August she became very breathless and her abdomen had swollen up to huge proportions. For this entire period she may have let her symptoms go unreported because she cares for her elderly parents (both 93, and my granda has severe dementia) because she was the primary carer. She has now said that her legs used to swell up during the day, but one morning she became quite concerned because the swelling wouldnt go away in her leg (she says it would be customary for the swelling to reduce in the morning). So, she contacted her GP and a nurse was sent to her home to take a blood test. The results came through late at night on 24/08/11 when the out-of-hours GP said she needed to make her way immediately to the nearest hospital (approx 20 miles away). I was driving home to my mummys that night as a close relative had just passed away following a 8 year battle with breast cancer. I don't know whether it was her physical ailments or the shock of being told (as an agoraphobic) that she had to travel 20 miles for immediate treatment; but mummy started getting very restricted breathing. To cut a long story short (too late!) the dr in the out-of-hours told me (because mummy wanted me to do the talking on her behalf) that the blood test showed she had high levels of something which suggested she had DVT and if her breathing was also restricted there was a high chance a piece of clot had broken off and made its way to her lung. There was a series of phone calls made between 11pm & 2am but basically somewhere in all the madness someone had contacted mummys GP who had said not to worry & that he would call down and see her the next morning. So my sister and i put her to bed about 2am but it was then we noticed her severley bloated abdomen, and i rang 999 because i didnt know if this was a linked symptom to her blood clot. The paramedics arrived; did a few tests and told her that they thought she would make it through the night (but got her to sign a disclaimer)' and said that her abdominal swelling was most likely due to constipation because of the incorrect thyroid tablets. So, thankfully i was there the next morning when her doctor arrived as he hadnt noticed her HUGE abdomen. He said he was going to put her on 1mg of warfarin for a presumed blood clot in her leg. When i said to him about her abdomen he had a feel around her belly and said "it was most likely an ovarian thing" and she would need a scan in a hospital (20 miles away) but he would "leave that with her". Obviously she was never going to arrange this scan for herself. She is petrified of travelling and not being close to her home. When i told my sister what the dr had said, she googled the symptoms and found ovarian cancer. When she told me i knew i had to intervene. I asked mummys GP to do the blood test for CA125, he initially was reluctant saying what was the point if mummy was not going to be able to go for treatment?! His advice was for mummy to recite the Lord's prayer to herslef & read Milton ( i had to check on the internet, apparently he is a poet!!) I tried every option i could think of where mummy could get the necessary scans done at home or as close to home as possible. There isnt enough space to tell you the details; but i tried everything! Eventually, seeing the efforts and lengths i was going to; her gp agreed to write a letter to the hospital for an abdominal ultrasound. I asked him to fax it and put my mobile no on the cover sheet. I got a private ambulance arranged and when she got to the hospital the radiology nurses (seeing how much it took mummy to get there) actually did the abdomenal scan and a CT scan. And thank God they did. The next day i got a call from mummy saying the dr wanted to speak to my sister & i; and that she was to be admitted to hospital ASAP. The CT scan showed that she had (as above) blood clots in both legs; both lungs; fluid on abdomen & lungs & a 14cm "mass" in her pelvis. Unfortunately she was given the choice of two rural hospitals (neither of which can actual offer treatment for what she needed) and ironically she opted for the one further away because she felt she would feel safer travelling in that direction. Anyway; this rural hospital had no-one who was specialised in cancer treatment. During her 4 weeks there, her abdomen was drained 3 times. On the first occasions it was just under 6 bags (11 litres); the 2nd time was 4 bags & the 3rd time was 2 bags. The fluid from her abdomen; and a sample from her lung was tested and both showed cancer cells. A hysteroscopy was carried out on the mass which showed that it was a non-cancerous polyp.

The reason i am sharing all this background is to share what I have experienced as the failings of our local health & trust service; but to also share the story of hope from knowing that you or your loved one is being treated by a specialist. In the rural hospital she was sent to & stayed for 4 weeks; the message was complete doom & gloom. Although they did not know her primary cancer; they assumed that because she had cancer cells in her abdomen and lungs; and because her abdomen needed drained 3 times that she had stage 4 ovarian cancer and there would be "no point going for treatment because the journey would take it out of you/the surgery would take it out of you/the chemo, if it worked would only add 3 months". Until recently i had never been a religious person, although my mum has been a born again christian since her teens. My daddy died of prostate cancer when i was 11, and for a few years while he was sick mummy had found a divine healer who laid his hands on daddy and prayed for healing. We actually had the divine healer come to our house one saturday each month and many people would come to our house for prayer. Anyway, that was over 20 years ago, and although mummy remained in contact with the healer it took her totally out of the blue when at the end of July this year her rang her out of the blue and said "what is wrong with you, for the past 2 days the Lord has been telling me you are very sick". When i heard that; and also that a good friend of hers from school also told her that "something has been playing on my mid about you in recent days, I knew you were not well"' i knew that there may be a stronger force at play. Aside from this positive feeling of faith, I am also blessed to have a boss who has survived cancer and whose daughter is a gynae oncologist & macmillan nurse. She has given me unbelievable support; direction & drive to believe in the voice tha i have been given to fight for my mummy.

Anyway, i have probably lost most of you by now, but this is what i want to tell you about the good news! Although my mummy fought with me; cursed me & made me feel completely shit about moving her to the specialist hospital (which she moved to on Tuesday of this week); they have already decided a plan of action! On Monday they hope to insert a shunt in the vein to her lungs which will catch any naughty clots which make their way to her lungs. On Wed/Thurs they hope to remove the polyp; AND the womb; ovaries etc etc; those organs will then go for testing & depending on the cancer she will either get chemo or radiology. In her previous hospital they wanted to let her go home; or to a local palliative ward to, effectively; die. Every day when my family visited we had to cheer her up because either a doctor; consultant or nurse had visited and had either told her her prognosis was very poor; or that her chemo wouldnt fix her & there was no point trying; or that she was "advanced" or the cancer was "aggressive" or blah blah blah. They had all totally written her off. At some point, in what seemed like a one-woman crusade I was given a number for a gynae oncologist nurse in the specialist hospital mummy is now in. The info i got from her was a world apart from the (excuse my french) shite we were being fed in the rural hospital!. Last night when i posted this message i was reacting to mummys weakness; fatigue etc and i started to doubt myself. Am i pushing her too hard? is is me being selfish wanting to exhaust "treatment" before we give uo? is she strong enough? Anyway, i had a fantastic chat with the gynae oncologist nurse today and she told me that mummy was not the worst case she had seen; and she was a long way from at the stage of giving up; and told us that the plan was to take out all the gynae organs/test them' and then give mummy either chemo or radiology. It is heartbreaking to think that had i not been a stubborn ****; or had mummy not had me or my boyfriend figthing for treatment- well she would probably have been left for dead. Literally. If anyone reading this is in a similar position PLEASE PLEASE PLEASE don't rely on your GP or any consultants that arent trained in gynae-oncology. Those non-cancer medical staff; although they think they are helping; are not giving you/your loved one the facts to make an informed choice. Mummy may not survive; mummy may decide that given her agoraphobia/anxiety she may not be able to cope with the length of treatment. I know now that if her time is up; and she is meant to pass I will have done everything that I can do to get her actual treatment by specifically trained medical staff; instead of sympathetic head tilts and smiles from staff who have her one foot in the grave without a fight. The divine healher I mentioned above is now 90; has survived cancer twice himself; is registered blind and is riddles with arthritis but he still came down to the hospital to visit mummy last night. He laid his hands on her and prayed for her. As he was leaving the hospital I saw him and i went to thank him for coming down to see her. I (very briefly) told him about her time in the rural hospital and explained the fight i had (directly against the medical staff in the hospital) to get her moved. He shook his head and said no way should mummy have gone to a palliative ward; and he had been praying for the lord to get her moved to the specialist hospital since july when he found out mummy was sick. I should have know i couldnt have pulled it off alone!!

I am sorry for the length of this reply. I have probably lost many of you along the way! It is great to be able to share my experiences - good and bad. I printed off the "survivor stories" for mummy to read so she can see what other women going through this have felt & survived. Thank you everyone for our stories and input. I really appreciate, and draw strength from each of you. I will be my mummys strength and voice through the tough times ahead and I will shae with her your stories of hope and love. Thank you all for the hope and encouragement you have given xxx Rosey