Stage 4 OC

[Be-Positive]

I know it doesn't tend to happen very often, however is there anyone who knows if someone has ever had stage 4 OC where treatment has been done and it never has returned? My mum is stage 4 but has been told there is NED, I was wanting to know if there are any positive stories where this has happened and they have got past the 5 year mark with NED. xxx

[Whippit]

Hi Be-Positive

As I understand from various talks by experts in the field our greatest hope is to be made No Evidence of Visible Disease through surgery. If that's the case for your Mum she may well have great hope for a very long remission and who knows, the potential of it not returning. I do know two women personally who had Stage IV disease and have not relapsed so far.

Wishing you and your mum all the best. She's a lucky lady to have such a loving and caring daughter.

xx Annie

[LesleyGreengran]

There's someone on the US forum for whom it did return but then after second treatment has stayed away for more than 5 years. I was diagnosed as stage 3/4 late in 2010 and have had treatment for one recurrence but I am close to the magic 5 years now, though I did have a second lot of chemo after 2 years 5 months. I was very fit and well once I had recovered from the chemo fatigue though, and I am again now. i hope your mother's treatment goes well and it's great that you are supporting her, that makes so much difference.

[Dagnese in reply to LesleyGreengran]

Stage 3/4, what organs involved for you? My mom (we are from Italy) has OC in her lungs and liver now. She's on Avastin and unfortunately still not NED...waiting for her next CT scan due in October... do you know anyone living long and "well" with cancer spread so far?

Thank you!! Hugs to all of you!

[Hidden]

Hi. I have just reached 5 years with no return. Stage 4 diagnosis April 2010. Not sure what NED means. X X

[Be-Positive in reply to Hidden]

NED means no evidence of disease. That is amazing you have got past the stage 4 mark! Did they manage to remove it all from the surgery? My mum had an apt yesterday and her CA125 is 15 and the surgeon said they are so pleased with the results and a few months ago we never thought it could be possible as she was stage 4 and in a very bad way! I am just now hoping and praying she can be in the 18% where it doesnt return, I know it doesnt happen often but holding onto hope helps everyone try and get back to normal and stay positive doesnt it. Thanks so much for replying xxxx

[Hidden in reply to Be-Positive]

Yes. I had massive surgery including quite a big mass taken from my liver. Liver surgeon didn't want to operate but my gynae surgeon persuaded him to go ahead. So grateful to them both. I wish your Mum well and try and keep positive (difficult I know). When you need a helping hand the wonderful ladies on this site will be there for you.

Love Chris x

[Be-Positive in reply to Hidden]

I just read your story, what an amazing result you have had and wow you have made me feel better knowing it is possible. So happy for you! Do you do anything special e.g. diet etc. or do you live a normal lifestyle as before? xxx

[Hidden in reply to Be-Positive]

Hi. I just live normally. No special diet although I don't eat red meat but that's because I don't like it. Still like my glass of wine in the evening with my meal and I really should do more excercise. Apart from that just try to do everything in moderation.

Take care X x

[Be-Positive in reply to Hidden]

That is good to know! My mum has been a vegetarian since she was 18 so she doesn't eat meat at all. She didn't even eat fish but since she has got ill she has started to eat fish to try and help with nutrients. Your really an inspiration I was telling my mum about you yesterday.

[Hidden]

Just seen Whippet's reply. Now I know what NED is and guess I have it.😀

[foss54]

Just read of someone on Facebook, stage 4, ten years on

[Be-Positive in reply to foss54]

Amazing! Thank you! My mum works with a lady who's sister was stage 4 and was clear for 10 years, it came back in her liver but has now gone again and has been given the all clear again and has been for a couple of years. There are some great stories out there. xxx

[citrine]

Hi, I was diagnosed with OC stage 3/4 just over four years ago. Finished treatment in January 2012 and so far there has been no recurrence. My consultant told me that I would be unlucky to have a recurrence now, though I know it's always a possibility. I do know of people with stage 4 who have survived for far longer without a recurrence.

Mary xx

[Be-Positive in reply to citrine]

That is amazing, so pleased for you! I think if you get past the 3 year mark after being so advance it is almost a big part of the hurdle towards being what they sort of class as 'cured'. I hope you continue to get past your 5, 10, 20 year mark with it not returning! Thank you for replying it has really helped me feel positive as although mums has gone it was the worry that it would 100% come back, but it is good to know that sometimes it doesn't so to try and move on from it and not wait for it to come back! xxxxxx

[citrine in reply to Be-Positive]

Thank you so much. Good luck and best wishes. X

[judyved-US]

Wow....so many wonderful stories that give me hope. I am relatively new to this.....diagnosed a year ago...Stage 4 OC. It had traveled to my pleura (lining of the lung). I had surgery one year ago tomorrow, started chemo (carbo/taxol) on Oct.29th, 2014, finished chemo on Feb.25th, 2015. Have had 3 checkups since then. My CA125 has continued to drop (4 at the last checkup), and other than the aches and pains from the chemo, I feel just fine. It's such a roller coaster, isn't it. Some days I feel like it never happened, and other days.....well, you all know!

So grateful for this forum.....I don't post very often, but I just want to let you all know that you're all in my prayers and thoughts every day.

Special prayers out to you and your Mom today, BE-Positive! Judy

[KAB-RN]

I'm so glad to have happened on this post. It has given me so much encouragement! I was diagnosed stage 4 on Feb 18, 2015. Went to hospital next day to drain 1 1/2 liters of fluid from my rt lung, have a meta port placed, biopsy taken from omentum then first dose of chemo. I felt like I was living a nightmare!!! I continued with the carbo/taxol regime and in May, I had a massive debulking surgery, had complications with an ilius, fluid overload, needing a transfusion, spend 2 weeks in rehab and finally home after 31 days. My follow up CT scan showed NED and I have had chemo every three weeks since. Hopefully, my last chemo was yesterday. I pray that I have the success that I'm reading about here. Bless you all.

[Be-Positive in reply to KAB-RN]

Hi KaAB-RN, I really feel for you and can completely relate to what a horrible journey you must of had (and still having). My mum was diagnosed in March 2015 again stage 4 and has been having a roller coaster of a time in and out of hospital and complications after surgery! I cannot tell you how many time I had to call an ambulance or take her to A&E where she would be admitted for days at a time! It was so sad to watch but she has come out the other side completely and it sounds like you have too! I have read so many stories of people at Stage 2-3 where they are not able to say there is NED, therefore being stage 4 and getting that result seems to be pretty amazing! It seems people react better than others to certain drugs, there is sooo much they can do these days! Mum had pretty standard treatment and reacted really well and they said if it was ever to return they could use the same treatment or there are so many other things they haven't even tried yet! I really hope you are starting to feel better like my mum is now, we have started to get our lives back again as a family and it feels so good enjoying every moment! Are you on Avastin now after your chemotherapy? Take care xxx

[KAB-RN in reply to Be-Positive]

Not on Avastin yet, Oncologist hasn't mentioned it. I also forgot to mention I just got out of hospital for a small bowel obstruction caused by adhesions from prior debulking surgery. Was in for 9 days until it finally resolved. I was so fearful of surgery again. I truly think prayers and positive thinking is pulling me thru this nightmare. I will include you mum in my prayers.

[Be-Positive in reply to KAB-RN]

I think sometimes Avastin is mainly used if it has spread to the lymph nodes, I could be completely wrong! It is suppose to cut of blood supply to your blood vessels to stop any cancer returning/growing. Might be worth mentioning to your Onc maybe.

Oh bless you, I bet it is so nice for you to be home! My mum was in hospital for 8 days because her bowel was irritated and she couldn't stop vomiting for over 24 hours, they had to put a tube down so they could try and help her stop being so sick! The journey you have to go through is so horrendous but what brave strong women you are! I always say to my mum she is so brave and how proud I am of her just pushing on through it all.

Thank you, I really hope you have a speedy recovery xxx

[KAB-RN in reply to Be-Positive]

Yes I'm familiar with that tube....had it for 6 days....horrible experience!!! Thanks for info on Avastin....I did spread to two lymph nodes!

[Patriciaa1963]

I'm only 15 months out from my last chemo in July 2014. I was stage 4. I had 900 cc's of fluid around my heart, that's how they found the cancer. I did very well on the chemo; carbo/taxol. My CA 125 has been between 9-11 for the past year. So far everything has looked good for me. I keep praying it stays that way. I met someone at my last chemo who was 3 months behind me in her diagnosis. She was stage 3. She found out in early September she had recurrence. She wasn't even off chemo for a year. It's scary to always worry about it coming back. I pray that your Mum stays NED.

[SandyL]

Hi Be-Positive,

I was diagnosed with Stage 1V Ovarian cancer over 16 years ago. I had a ca 125 of 9800 and massive pulmonary embolisms. Because of the embolisms I had 3 chemo's before surgery then 6 after surgery. At the end of treatment I was told I was NED. Thankfully, I'm still NED. So please tell your Mum she is not a statistic - it is possible to have NED after initial treatment. My surgery was very successful, in fact my Gyn/Onc said I was debulked to within 1 millimetre - she then asked, "Do you know how big a millimetre is?" I said, "No" (I never liked the metric system She said, "It's about the size of a pencil point". And so, I kept that picture in my mind

[Dagnese in reply to SandyL]

Hi SandyL,

I'm writing here for the second time...I am frome Rome. My mum was perfectely opt last year and few months after her first line chemo a recurrence was detected with mets to liver and lungs. After second line therapy she's now on Avastin. Some disease is still in her lungs and liver but I feel positive she will be in remission soon hopefully also ned. Don't know why I'm sure of this. What I really wnt to know from you is in what way your cancer was stage 4? Because I know that stage 4 is not curable and when cancer is in vital organs (such as lungs or liver) is only a question of time... sorry if I ask you specific things but I am so rational that only detailed information can reassure me. I really need hope even to tell my mother your story.

Bless you all, hugs, Dagn.

[SandyL]

Hello Dagn, if I hadn't believed that a Stage 1V diagnosis was not curable, well I wouldn't be here right now because my outcome was guided by my (own) thoughts and beliefs - consciously and unconsciously. If you are the kind of person who is ruled by facts , figures and research, then you may find it hard to understand this concept and seeing as we are all different in every way possible, I can certainly accept that view as well. You asked about what made my diagnosis a "Stage 1V" so, because the process was rather complicated, bear with me as I recollect the details.

In March 1999 I was rushed via ambulance to the nearest large hospital (a 3 hour drive away from the community hospital where I'd been accepted as a patient) with massive pulmonary embolisms and 'suspected' cancer of some kind.

During the 3 weeks I was at the (teaching) hospital, I underwent many tests to determine the kind of cancer I had. With massive ascites (looked 9 months pregnant) fluid was drawn from this accumulation and tested. Ovarian cancer was the diagnosis.

A CT scan showed lesions on my liver and inside the peritoneum cavity so the diagnosis was tentatively assessed as Stage 3 to 4, but a definite diagnosis couldn't be made until surgery. Due to the pulmonary embolisms, surgery was deemed too dangerous because of the blood thinners I was taking to eliminate the blood clots, however, after 3 chemo's (Taxol and Carboplatin) my progress, monitored by monthly CT scans and physical exams, was deemed good enough to risk the surgery. Three days prior to surgery I had to stop taking blood thinners. The surgery was apparently a great success. The cancer in the liver and peritoneum was gone by this time, but there was cancer on both tubes and ovaries. The disease had spread to the umbilicus (this is what made it a Stage 1V), which is quite rare (apparently) and often connected to a bad outcome.

Following surgery I had 6 more chemo's and was in remission after the 5th one with a Ca 125 of 15.2 (it was 9800 at diagnosis), but still had the last chemo as consolidation (my word So, that's my story in a nutshell. To this day my Dr calls me, "The miracle lady" and for that I'm grateful and blessed because my good outcome has given many women I've come to know over the years the hope they needed so badly.

I know of quite a few women, like me, who have survived Stage 1V cancer and lived for many years without recurrence. I'm happy to be here to see my 4 sons get married and 6 grandchildren enter my life. I feel humbled and blessed - that's all I can say. I value and enjoy every day to the fullest, because I know how lucky I am.

I do hope my story gives your Mum hope. Sandy.