I am 63 years old and I was diagnosed with ovarian cancer December 2017. I was very healthy up until then. I under went several rounds of chemo and was able to have surgery in May 2018. My surgeon removed my omentum, was able to remove the cancer on my bowel without removing any of the bowel and did a complete hysterectomy. It was the hysterectomy that took a long time. Apparently I had endometriosis and the surgery was very complicated. My surgeon was able to remove all the cancer and I am currently undergoing chemo treatments to clear up the microscopic bits.
I was doing okay up until my doctor told me the statistics for this cancer and now I can’t shake the feeling of despair. I am usually a positive person, but I have been sent into a tail spin! Part of it is, I’m sure, I am still healing from the operation and I am still under the cloud of chemo. I have two more treatments, hopefully I will be done by the end of July.
I need some positive feedback!!
Thanks!
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Ravenmuse
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Hi Raven, i was diagnosed stage 3 in 2007, told prognosis not good, had a couple of years. well now in 11th year and despite 2 recurrences still here currently NED ( no evidence of disease) working full time and with a CA125 of less than 3. . You are not a statistic you are you. Counselling might help you with dealing with how you are feeling. Sending you a big hug, Kathy xx
Thanks! I am having a really hard time with all this. It’s so surreal. I think if I felt better I might be able to deal with the emotional end of things. I just need to be done with chemo!!
I am lucky. I have a loving and supportive husband, two wonderful kids and friends.
Hi .. I also had 4 chemo then surgery then two mop up chemo. That was 2015... I’ve had a great time since then and although my cancer is on its way back I feel well and up for the challenge. Try to give yourself a pat on the back for all you have gone through up to now. Don’t forget stats aren’t people...each of us is different and will have our own path. That said...many cancer patients do suffer a form of ptsd following treatment...so if you feel low mood is persistent do get some help. Much love xx
I really understand. I don’t think the Consultants realise that their words reverberate in our brains. One of my Consultants said to me (when I was just diagnosed & very poorly), “You know we can’t cure you”. What does one say/think after that??
However......you will find out that NO-ONE can predict how things pan out for any of us!! So be strong, take courage and just concentrate on your next few chemos and becoming strong again 🙂 The body is amazing..
I was diagnosed in 2012 and despite attempts to write me off am currently still here lol
All of our journeys are different. It sounds to me as if it’s all going very well, now is the time to relax, let your body recover and get back to living your life.
Thanks! I am overwhelmed with the response I’ve gotten. This is what I needed!
I’m hoping to get a second opinion, not that I don’t believe my diagnosis, but I’m hoping to be given a direction to move in. I feel like I have very little control in this. I hope to get some sort of nutrition advice as well as other things that might help keep this cancer at bay!
Hi Raven. when I was diagnosed I was told that I would not see the year out that was 4 years ago, it 's not always been easy but I managed and still kept my little part time job.
NO ONE can give you a time limit, the statics for ovarian cancer are so old and we have had some good results with new treatment and trials in the last few years ,we still need more but there are options so as soon as your team has a plain you will feel better.
Of course you will be still getting over your surgery it was not a small thing and think of the chemo as giving any cancer left a good kick in the butt.
Thanks! I do think doctors need change how they deliver bad news. It’s so devastating to be told most people don’t live beyond 5 years and the cancer WILL come back! Ugh.
Hi Raven. Here's another one to improve your confidence. I was diagnosed 2011 at age 65 with stage 3C OC. Had hysterectomy, then 3 months chemo, then another op to remove the cancer, then 3 months more of chemo. That's more than 6 1/2 years ago. I had a recurrence & needed chemo again but have now been in this 2nd remission for >3 1/2 years and I'm fit & well. Like you, I'd always been healthy - only needed my doc for pap smears. Barely needed any pills all my life, so couldn't believe that I could possibly have OC. But I DID have OC and I've learned to live with it. You will too; takes a while for the shock to go and to accept this new life you lead. Treatments are improving all the time. More treatment-options have become available in the time I've been on this treadmill. You'll be fine. Best wishes. Pauline.
Hi I was diagnosed stage 1c in July 2016, I was was 64. Had total hysterectomy followed by 6 cycles of chemo. Have been all clear ever since. I have an oncology check up tomorrow, stupidly dreading it as I feel fine, just hate going there. Have faith in your team, and as said your journey is individual to you. My husband was diagnosed in 2008 with stage 4 bowel cancer, now in his 7 th year of remission. Keep a positive outlook, always have something to look forward to, just a lunch with a friend can lift your spirits. You will be fine. x
Hi there I was diagnosed at age 64 in 2010 Like you never had any major health problems Yes it is a shock but I was NED for almost 5 years have had a couple of reoccences but am currently NED again and on Maintenance treatment.Still lead a reasonable normal life just a few adjustments We never know what the future holds so just take one day at a time Sending lots of good vibes xox Cathy
I do wish some doctors would get some people skills 😬. It’s a scary diagnosis and one that’s difficult to take on board, but it can be done, you’re just in a difficult place at the moment, it can get so much better. I was 59 and I too was very healthy, very fit and loving life, I was then diagnosed in 2014 stage 1C3 clear cell carcinoma of the left ovary together with a pulmonary embolism and Hypercalcaemia. I had the ‘normal’ surgical removal of just about anything they could get their hands on followed by carboplatin and Paclitaxol.
I’m still NED, I hope to stay that way for a long long time, I think that a little counselling often can help us come to terms a little more with our diagnosis , CBT therapy is really useful if you’re still struggling. Please remember that statistics are just that, numbers, the numbers are often very out of date, wrong and not always relevant, they don’t apply to everybody and you are an individual, as are we all, and you can do this! You have us lovely lot to support you, we all know about this disease, in some ways we know better than the medics because we’ve actually been there and done it and got the T shirts, experience can’t be taught it can only be learned so we will help you in any way we possibly can do. Big hugs and love lovely ❤️Xx Jane
chemo makes you feel so terrible and sick that you may almost feel the side affects are the cancer but once the chemo is finished and u feel well and start doing things again you will feel better. Would you try some complementary therapies for your mind, yoga reflexology, reiki or other healing, also some essential oils lavender,frankincense oil is also good listening to mindfulness mediation at home is also good for the mind. I was diagnosed last november stage 4 Im 36 with 3 kids I hate my medical team they are so rude and cold and I give it right back to them I have complained them to the patient advocacy at our local hospital. I was given the same approach you are sick we cannot cure you spend time with your family and this was a few weeks to christmas and looking back now I had a good year apart from the bad few days after chemo I still got to celebrate occasions go on holidays and planning fun stuff for the summer when my kids are off im on maintence avastin every 3 weeks now until things change.
It’s so hard! I guess you really do have to take each day as it comes and enjoy it. I try to set little goals for myself. They may not be much, but each one is an accomplishment! Hang in there!
My daughter (a junior doctor at the time of me finishing my second chemo after second major op) advised, "Don't set targets, Mum...just notice trends." This was a huge help to me as I stopped setting myself a target, however small (and risking being disappointed), and noticed the detail of the trends (what my tummy did actually cope with, if I could manage a bit further in my walk/swim, etc. etc.) and celebrated at every small nudge forward.
I too can join the 'army' of of us who have received dire prognoses (and more than once for some of us) and reality is proving these wrong for each of us. For me, the frequency and lengths of the feelings of despair, sadness, etc. started to diminish after my GP's words of "Your job is to grow healthy cells so that you bring we medics the best possible platform to make choices for treatment...don't lose more weight, exercise well (I've found walking, swimming and pilates/yoga work for me) and rest well (the hardest to do as our strength returns)."
I'd add to that,just as others are sharing, also work on your mind, e.g. mindfulness meditation, counselling, noticing the people in your life who are the 'drains' and 'radiators' and choose to spend more time in the company of the 'radiators', nourish your hobbies (or develop new ones which you can do whilst resting), if you are working the look at how this may shift so that the times etc. are kinder to you. Mentally, shifting yourself so that "You are your own best friend" may work for you too.
I have clear cell ovarian cancer stage 3c and had a huge operation in December 2016 followed by chemo. Previously I was very strong and healthy and there is no history of cancer in my family. I read the statistics on google which gave me about 7 months. When the chemo failed and the cancer came back I decided to see a specialist in London. I am now on a phase one clinical trial which has kept me stable for 6 months so far. I travel to London from Cornwall by train every fortnight. There are a couple of trials specifically for clear cell although the one I am on is for advanced solid tumours. The reason the prognosis is poor for occc is because it often does not respond to chemo - however I have seen posts from ladies who have had chemo and never recurred. But for those who do recur there are many more treatments available than a few years ago. I was not told about phase one trials by my oncologist and thoroughly recommend a second opinion.
So far I haven’t been offered any other treatments besides the extra chemo from my oncologist. I think I am going to have a second opinion! I think that would help. I’m looking for new treatments!
Hi Ravenmuse. I think the doctors who deal with us need lessons in dealing with us!!! I think at my hospital, they do get that training because they do NOT quote statistics (I did one one Nurse Ratchet who was horrendous but luckily got transferred at some point--she loved to scare me) but my onc said no one knows how long ANY of us have--you could get hit by a bus tomorrow. I also asked another onc who was substituting for mine one day (thinking I could get a different input) and although he told me the "average" amount of time for my specific stage (4a) BRCA II, he said "this is WITHOUT any new treatments as of now" and it was a LONG time. That was before PARPs were brought to market. And average is not me! I also tell my onc every time I see him to please calm down this nervous nelly (me!) and he always responds by saying "so many more things in the arsenal if needed, don't worry". That sends me off with hope, positive attitude and breathing room! Hope the same for you and listen to these smart women---you are you, and you can do this and get to a place of enjoying life and not allowing cancer to define you. oxox
I am assuming by doctor you mean your GP? if so please take no notice they are not consultants but General Practitioner's. A surgery is only likely to see one case of Ovarian Cancer every 5 years. My doctor scared the living day lights out of me! she looked at my CT scan summary (not the scan itself) and said to me and my husband, oh its spread they wont bother operating! I am awaiting the start of my treatment plan, which included Chemo and then a hysterectomy. I totally understand how scared you must be but you are on the mend.......believe it! Book a holiday for when your treatment free and give yourself something to look forward to.
While there's life there's hope. Read some of the inspirational stories from amazing women on here. If I can aspire to be half as brave I will be happy. You will feel better and go traveling and have a fantastic time and your oncologist can go **** herself.!
I have recently been on a cruise to the Canaries- I was allowed to go in the middle of my treatment. I didn't think it would be possible but read how everyone else on this forum goes on holiday and I did it - and it was great.
Doctors don't know how long any of us have got. Like the rest of us I had the same as you stage 3C, the chemo the ops and here I am five years on and will be here in another five years.
I think we all go through the up and down stages but as time goes on you will improve and you'll get your strength back and get back to normal. Sometimes, I even forget I ever had cancer.
Don't forget, whatever the statistics you don't know which side you'll fall on so why shouldn't you be in the percentage of survivors.
Take each day as it comes and make the most of it. We should do this with or without cancer. You will get there.
Can’t say much more than all of the above. We are the real woman going through it who totally get your feelings.
I found my chemo post surgery was very difficult. But in time you do adjust, I recommend counselling. For me when you’ve been told you have 2 years to live ( yes that is true ) and inoperable, it takes a lot to come back from that.
Hope you feel less on your own in your feelings now xxx
I like my oncologist! But her beside manner leaves a bit to be desired! She left no door of hope open!!! I am so impressed by the women on this forum! They give me hope!!!
It’s actually my oncologist who delivered the negative news. She never qualified it, or tempered it. I don’t need things to be sugar coated, but she was so blunt.
I’m hoping to feel well enough to do some traveling!! Hoping that happens!!
I also was diagnosed with stage 3 OC last September and had surgery/ chemo. Give yourself time to heal. A lot of good advice from these ladies and I agree with taking your time to heal and take care of yourself. Surround yourself with people who will help you get through this whether it be counselors, folks on this website, or a friend who can brighten your day. I had my surgeon tell me that this was a chronic condition that needed to be monitored and to keep my life as normal as possible. I am taking his advice. I also actively seek to empower myself spiritually and that helps my emotional state. No one can predict your journey. You have to ignore the statistics and be determined to fight the beast!
Hi, Ravenmuse. I feel you. I was first diagnosed in 2015 with stage 3 OC. Surgery, 6 chemos and Dr. said got everything and that the chemo was to get rid of microscopic cells. Great.
February 2018 my CA125 doubled from 11 to 22. Although, below the 35 marker, they took a CATSCAN which revealed enlarged lymphnodes and a 5mm nodule which was not attached to any organ. Too small to take out surgically and big enough not to ignore. They said 6 rounds of chemo (I just finished my last round 10 days ago). When I went in for the CATSCAN results one of the nurses turned to me and said "you know this is a recurring disease." I was floored. I wasn't prepared for this. When they said they got everything, I believed them. Had I researched or even asked around...I would have been told that tidbit about OC. Anyway, that's how I ended up on this wonderful site. I went in search of statistics, etc and really freaked myself out until these lovely ladies told me that all the internet statistics are at least 5-10 years old. Many of the survivors (and there are many) don't really stay on these boards. What seems to be a death sentence suddenly made sense that all I have to do is stay ahead of this condition just like diabetes or any other chronic illness. Of course, I was still pretty flipped out.
This big, long speech was meant to be positive for you. It really is. We are lucky that we found out when we did and I do believe there's a cure out there, if not, a way of staying way ahead of this. I just know it. Live your life and embrace everyone around you. This all has made me so much aware of life and living. I'm taking the attitude...che sara ...sara.
I know you will be well. Stay ahead of it and you will be just fine.
Going for a second opinion is great. Approaches to this horrible disease varies from hospital to hospital. And, of course, you poor thing....your body is in shock from the surgery and chemo. Just alone, each can temporarily put you in such a bad state. Good news is every day you will feel better and stronger.
Stay well and let us know about your second opinion. The best to you!
I had my second opinion and there was no earth shattering news. The doctor was able to tell me once the cancer comes back there will be options for me. She mentioned immune therapy which sounds promising.
It seems to me there should be something to keep it at bay before it actually comes back!
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