I have been following the posts since December when I was diagnosed with ovarian cancer. I had surgery in January and was told afterwards that the cancer had spread. Just before I started chemo (taxol/Carbo) my oncologist explained that the cancer is now in my peritoneum, my liver and stomach nodes. Such a shock to find out that the cancer is not curable. She guessed at a year’s life expectancy. I’m 52 and thought I’d be around much longer!
Well, I just had chemo 5 of 6 and I am maintaining an attitude of being glad to feel well enough to get up each morning and to continue in my work. I have to make a special effort to keep positive but I really don’t want to waste time feeling down.
Anyway, it has helped to write this. Thank you for listening!
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Gigicat
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Welcome to the place that no one wants to be. Your oncologist may guess but no one knows. It is great that you are getting on with life. I have always tried to enjoy what I can when I can even before diagnosis. Not always easy but just go for it.
Please just post re your good days or bad as everyone is very friendly and will understand.
Best wishes
Fay
Hello Gigicat and welcome. I agree with Fay, your oncologist doesn't know how long you have. Many women on here have been given a prognosis and are still here many years later. Stay positive and continue to be upbeat and get on with your life. xx
First of all as Fay has said your oncologist doesn’t know how long you have, they’re wrong to give you a ‘sell by date’. I care for someone with Ovarian Cancer and she was given 6 months to live with chemo that was nearly 4 and a half years ago, diagnosed stage 3c high grade BRCA negative, don’t get me wrong we know we’re nearing the point where her oncologist will say ‘I’m sorry there’s nothing else we can do’ but she’s fully appreciative of the fact she’s still here today. She was 56 when diagnosed and it’s been an emotional rollercoaster full of ups and downs, the main thing is finding treatment that works well for you to get you NED (no evidence of disease) then hope it doesn’t come back. Unfortunately for my special person her cancer has returned on several occasions so the most her cancer can be is dormant, she’s heading for her eighth line of treatment in a couple of months (if it works). Ask your oncologist about Avastin and PARP inhibitors to be added into the mix PARPs are usually after 2nd or 3rd line but always worth asking questions. Keep us updated with your journey and remember EVERYONE is different so just because one treatment doesn’t work for one person doesn’t mean it won’t work for others xxx
Hey lovely, I’m 53, just! I got my diagnosis for my 50th birthday. I was 3c high grade serous, I’ve had one recurrence last year. I’m still here, still working part time and still enjoying life. I’m probably just starting a recurrence but with chemo I should get a few more years but who really knows.
Welcome to the forum, I’m on and off depending on how busy I am but everyone is lovely and very helpful.
I agree with what all the other lovely ladies have said! You do not have a sell by date tattooed on you somewhere and you oncologist had no right to say that to you especially before you’ve even had your chemo!
I’m 2 years past diagnosis on 1st June I too have 3c and have been told incurable but still lots of options for treatment and they can manage this pesky beast for a long time I’m currently in the middle of my 3rd line of chemo!!
So keep upbeat and as Laura says gentle exercise and enjoy your life you can live a long time with cancer so make sure you do things that bring you joy
I have oc stage 4 and I was diagnosed in 2013 - have had two reccurences and am on my third session of chemo (carb/taxol and from the last scan it is working) and I certainly have not got my sell by date in sight yet and hope never. There are lots of people out there who were told the same thing and are still living. Doctor's don't have all the answers my dear. Keep strong. A big hug Anne.
Hi
I agree wholeheartedly that your Oncologist should not have said that! I was diagnosed October 2016, stage4b, inoperable but treatable.
Been on maintainenance drug since July last year but think recurrence again so more chemo on horizon.
Best of luck on this journey no-one wants to be on.
Interesting reading your reply that you were diagnosed 4b inoperable in October 2016. I was diagnosed 4b july 2018 and told inoperable January this year currently on Avastin I am very interested in your journey as someone who has not had surgery. Good luck
Hi Gigicat. There is nothing useful I can add to what the others have said so I just wanted to welcome you to our little band and wish you the best possible outcome. Jo 🌺🌼🌸🌻🌹
Well you sound to me like an amazingly couragious lady. You knock that diagnosis on its head. Cant believe your Oncologist gave you a timescale. I wish you well. Xxx
I think you should consider a second opinion. My cancer spread to my liver during frontline chemo and I was offered caelyx. I went for a second opinion at the London Clinic, I paid to get a quick appointment, and was immediately referred to the Clinical Trials Facililty. The trial I am on has kept me stable for 17 months so far although am awaiting latest scan results. My google prognosis was about 7 months but I have at least made it to 2 1/2 years. Noone knows how long you have left but I would say to leave no stone unturned in your quest for new treatments as they are out there. My oncologist did not tell me about phase one trials- my path has been through my own research and help from social media forums.
Hello Gigicat and sorry you find yourself joining us but be assured you will always have a listening ear on this site. You have already been given some good advice and tips by ladies with knowledge gained through experience and learning. So I will just say here’s a hand to hold🤝 on your journey. x
As the others say, welcome and sorry you're here...
I imagine, if your oncologist gave you a timespan, perhaps you asked them how long they thought you'd got, because they don't usually say, unless its the usual mantra of 'we can give you another five years with surgery and chemo'. Either way, putting your business in order is a good idea - once you've done that, and finished your chemo, then make the most of whatever time is left to you in whatever way suits you best, including seeking out second opinions or researching for trial drugs, if that's something you want to do. And you may get a lot longer anyway ... I keep repeating this, but I'll say it again, because you likely won't have seen it...
When I asked my senior oncologist if I was dying very soon (I'm Stage 4b, there ain't a stage 5) he said first 'well, we're all dying' and then that he couldn't say how long I'd got with or without chemo, because he had seen people leave the hospital with a very good prognosis who were gone within six months, but others who left with a very poor prognosis and were still alive and kicking ten years later - and they have no idea why. There's a lot they don't know about cancer as well as a lot they do...
Sounds like you're coping with the chemo pretty well from what you say, which is a good thing.... keep well and come back to say anything you like whenever you feel like it😊
Hi Gigicat. The responses you have gotten are testament to the value of this group. There is help through the hard times, and joy shared through the good times. And there are valuable "opinions" based on experience of others or by reading things you may not have. I had it "everywhere" when diagnosed in 2016 and had to do neoadnuvant treatment which worked very well. I also--based on this forum--went for a second opinion when I was relapsing and it proved invaluable. A good oncologist never minds you getting a 2nd opinion-as a matter of fact, they should welcome it. Options abound and no one ever should give you prognosis for end date...they just don't know and we need to have hope. DO ask about a PARP inhibitor or other maintenance therapy when done with Frontline. With a PARP, you have a limited amount of time between end of chemo and start of the PARP so do your asking before its done. Better to be ask and know why not then to not get it because you didn't ask. And maybe you will be able to. Wishing you luck and hope you keep us posted. oxoxox Judy
Hi Gigicat. I agree with everyone that your doctor’s prognosis makes no sense. I agree with Neona that you should get a second opinion from a top cancer center. I especially wonder whether they can do some high tech surgery on your liver nodules. I’m sure it depends where they are and how extensive. Did the cancer spread during chemo, meaning you would be platinum resistant or refractory? If so clinical trials might be your best bet. I wish you hope and good days!
Just wanted to say hello having read your post. I’m 51 and was also diagnosed in December with surgery in January and just finished 5th chemo. Being treated at Barts. Mine is 3c but very conscious of the likelihood of recurrence. I’m off work for now but being kept busy by my kids (10 and 7). Sounds like you are doing well on the chemo. Wishing you all the best and if you ever want to compare notes do message me. Jane x
I am not liking your oncologist much right now. With the uncountable ways this cancer can act and the many options for treatment there is rarely a reason to give anyone a span of time. I suggest a second opinion, also, and keep coming to us for support. These ladies know their stuff but also realize each is a difference in the path their disease takes. It's very individual and unique to each person. I love your attitude! I think it's key to keep a positive outlook. Big hug from across the pond!
Tip top thoughts from everyone, as always, on this forum. Has anyone mentioned about ringing the Ovacome's freephone helpline 0800 008 7054 and talking to either Anna or Julia? They are there to be both informative on treatments, options and supportive when we feel 'wobbly'. If so, apologies for rushing through my reading of everyones contributions.
Thank you so much for your replies. I am really happy that I took the plunge and opened up. I appreciate the advice and the support is amazing. You’re a wonderful group - it makes me emotional (in a good way!). I’ll be in touch in a few weeks once I have finished the 6th chemo session. It’s tough - not looking forward to that.
I agree with others' comments and would add that being about half way through the book by Jane McLelland "How to Starve Cancer" ( she was diagnosed with Cervical cancer in the 90s - stage 4 spread to other areas, and is still around now) there look to be other ways of attacking this disease. Our hospital is trialling the low dose aspirin, and my onc has OKd me to try it although they aren't trialling it for Ovarian Cancer. ( Why not???) Another patient is also following it and I think a lot of patients all over the country are.
There is a lot of useful information in that book which I am trying to digest ( I was diagnosed in October last year with low grade which gets no research funding ).
We are trying to alter this for ourselves.
There is always hope. Diet and supplements are her approach and have met with a lot of success despite the NHS not yet changing its approach .
Hi, Alex. I just purchased Jane's book. It totally makes sense. I just went on a one month cleanse/detox and my CA dropped from 35 to 31. I'll take it.
Welcome, nothing to add, as you can see it’s an amazing group, people will always help when you post. I’m 50. You sound as if you are doing so well. Nicola x
Totally agree with the other ladies... She was wrong to give you that prognosis. We are all told about how a positive mental attitude helps us fight the beast ( even though this feels impossible at times), so how, at the start of your treatment did she think this news would help you maintain any positivity? I would seriously consider asking for a different consultant.
I was diagnosed in October 2017 with stage 4...lungs, peritoneum, left ureter, aorta. The scan after first line carbo/taxol showed that it had done its job. 7 months of Avastin followed and my last scan in April this year shows no change. CA125 steady at 10.
Try and look past her words and know that all those twinges you are feeling are the chemo doing its thing, even though it wipes you out, takes your hair etc, etc. you will get stronger, your hair will grow back.
Welcome to the band of teal warriors. There are plenty of us who are living proof on here that stage 4 doesn’t mean you don’t stand a good chance of a positive reaction to the treatment.
Hi, Gigicat. I love that you are planning to live each day and stay positive. As I am writing this, I am screaming....your dr. should not have given you a time line. That was irresponsible and insensitive. There are many many options and treatments out there.
He needs to find one that will work for you. This involves genetic testing and testing of the tumour itself. Never give up. Keep your body healthy. Vitamin C, the B's, tons of water.
You're only 52 and I know in my heart you will do well. Simply because of your attitude. All the lovely ladies in this group offered some great advise. We are here for you and please just check in and let us know how you're doing.
Hang in there Gigicat. I lost my wife of 38 yrs this past January to this dreadful disease. But I like to read about you brave ladies taking this disease on headfirst.
Went to the Ovarian run for life earlier this month in Fairfax Va.
Again I'm inspired by the toughness of these women!
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