Upset again

Hi I posted on here only a few days that I had just been told by the onc that I had stage 4 oc which had spread to liver and stomach lymph nodes and that I was going to die of it. Through the support of you lovely ladies and the positive experience of having taxol/Carbo Chemo on Wednesday and still feeling well today felt much brighter and positive. I have just come back from seeing my local gp - only went for weekly support really who told me I would become ill and most probably die within the year. Back to square one again can't stop crying, shaking and what's the point of it all anymore. I can't keep it together again and am just making those around me more upset. Advice needed please. Kim x

66 Replies

  • From someone who knows bite the bullet and try to focus on the future!! Big hugs. Carole xx

  • I am so sorry you have had this experience. I had a similar one with my GP who was supposed to be filling in an NHS Care Plan for me. It was a tick box exercise and she just wanted to record that she had offered palliative care. Not one word of support or comfort. I was very down for days afterwards.

    You have just started chemo and the docs will need to assess your response in due course. I am not sure any doc worth their salt would make predictions at this stage. It's very hard but try to take one day at a time and focus on your treatment. Most GPs don't have experience with OC and PPC anyway - if they are not completely up to date they should keep quiet.

    Hugs, Elaine x

  • Thank you x

  • I'm utterly appalled by what your GP said. A GP is not a specialist, and not God either. At the moment you are being treated and the vast majority of women with ovarian cancer respond to treatment. I think the statistics are something like 80% have a positive response to first treatment. There are GP members here, hopefully they will respond.

    Please call the Ovacome nurses. They will reassure you.

    There are women here with stage 4 who replied to your first post who have lived for years. Someone else had a surgeon telling her something similar - years later she is still here. My surgeon was pessimistic - I have long outlived his prognosis. I bumped into him recently, he looked surprised and smiled. I just glared at him.

    This is absolutely what you don't need. I don't know what your relationship is with your GP, but I would consider writing a softly worded letter letting him/her know how they made you feel, or even a formal complaint. Coping with the complaints process is not easy, and now is not the time to embark on it unless you are sure you want the hassle. But whoever it was needs to know the effect of their words.

    I don't know where you're being treated, but any good oncologist would tell you that, despite the statistics, they know of women who have survived stage 4. My oncologist has a patient who he still sees for reviews who was deemed hopeless 30 years ago. She is still here.

    And don't worry about upsetting those around you. At the moment, perhaps more than ever before, you need all the support you can get.

    I feel so angry writing this. I'd have a stiff drink, curse the ******, and resolve to forget it. Very best, Vxxx

  • I am smiling at your respond Victoria, my former Kim gynae consultant cant look me in the face and I do feel like glaring at him and more besides. Now I just see the onc and have a level playing pitch. I agree I dont think any of them know what is in store. We respond to treatment much better than expected and that makes the disease more manageable. Okay if the treatment keeps us alive and we are fairly well clinically well I say to hell with their expectations. My onc says there is always hope and I believe him. Kimjane, you can live with treatment and get a break now and again. Its far too early to get a prognosis, wait until treatment is finished and ct scan and then hopefully things will look better for you. This is a roller coaster journey that is just awful for us and we cant get off and that stiffles us to an extent. But there is always hope and I do hope you get a good remission when treatment is finished, to hell with these gods who give time limits, ask him next time, how long is a piece of string, its as long as you want to cut it to length, Try and chill and have a nice Xmas

  • Thank you so much for the support. I am just beginning to get back the confidence I had got from this site. X

  • Thank you so much x

  • Thank you. It really helps to receive the positive feedback and advice. X

  • Thank you.

  • These are just statistics. There are plenty of women here stage 4 who have been around for years. I should have been dead long ago going on the Statistics (by the way they are known to be out of date as well). If you responded well to chemo are feeling good that is half the battle. The other half is in your mind. Stay positive fight and remember all the health officials you deal with are working for you. If you don't like what they are saying challenge them. Tell them how you feel and tell them when there comments are inappropriate too often we sit there and say nothing thinking they know best. Your GP is your GP he/she is not part of your Oncology team and is not treating you and will know less and less on a daily basis as to how you are doing. Be strong stay positive we are here for you xxxx Trish

  • On Trish you are brill, I am totally with you girl, you are so rightx

  • Thank you x

  • Take a deep breath, I totally agree with what V said. Your doctor can't possible know how long you have left at this stage, keep busy, positive thoughts, this is where Bernie Siegal comes in.

    Keep posting, ok ?

    Leenie x x x

  • Thank you x

  • Hi there

    Hi there

    So very sorry that you have had this experience....some doctors are fantastic at saying the wrong thing at the wrong time.

    I was diagnosed 5 years ago and am still very much here..and have been on these boards for a long time. There is also an American site called Inspire...both have masses of Stage 4 ladies....and treatment is getting better all the time.

    Try to avoid this GP if you staff are usually more empathetic. Most hospitals have counsellors attached to their oncologist units that are incredibly good at helping you with how you feel...thks is perfectly normal.

    Once you get into the system and have a team accountable for your on going care I'm sure you will feel alot better.

    Love and hugsxxx

  • Thank you x

  • How terrible to be told that by your GP, when I had bad news about recurrence last week my oncologist said everyone's cancer is different, and I'm glad he didn't try to guess at my outcome. I'm concentrating on being positive and enjoying every day for what it is, please don't let this ruin how you were feeling before you saw the GP.

    Love Trudy xx

  • Trudy, new drugs are coming 2015 all we need to do is hang on.

  • Thanks Kazrazmataz, I'll be doing my very best to hang on :-)

  • Thank you x

  • I have stage 3c and was given similar prognosis but with the support of family friends and Penny Brohn Cancer Care I am two and a half years down the line and fighting.

    I would advise you to gain as much knowledge as you can and seek advice from as many sources as possible.

    Good luck to you and try to have a happy Christmas xxxxxxxxxxx

  • Thank you x

  • I had major surgery last year to remove a large necrotic tumour. I was very ill and when I asked for the truth, the surgeon in my local hospital shook his head and told me he was very sorry. He said that I'd be referred back to my oncologist but that the scenario wasn't good.When I told my oncologist, she said general surgeons aren't experts and should ask for advice if they want to give it out. 15 months later, and I'm feeling so much better. I don't know why and I don't care why so long as it lasts. I'm still waiting to start treatment. So that's 3 years 9 months in all though I had it way before diagnosis. Friends here have given you some really good insights. I can really understand why you're upset. xxxx

  • Thank you x

  • I was diagnosed in November 2012 stage four ovarian cancer. I had Taxol/ Carboplatin I wasn't really too bad on it tired yes oh and constipated. I was only constipated after first chemo as I ate lots of liquorice allsorts, not that it was any effort as I love liquorice. I had six chemos before my debulking ( I hate that word). My lovely gynaecologist explained everything including the fact that he might have to open and close. I was very lucky as he told me he was able to remove all visible signs of disease. I have a permanent colostomy but that's no problem. I had three more chemos after I healed only Carboplatin this time but with Avastin added. I have now been in remission for fifteen months. I am lucky to still have Avastin every 21 days. I am in a trial where the research nurses follow me up every time I have the Avastin.

    Please think positively and you will be fine.


  • Thank you x

  • Hi Jean was having difficulty typing your blog name but its getting late. Just am interested in you being on Avastin every three weeks, I am also doing this penance since Oct 2013 and will continue on it for another 12 months. Here in Ireland there is no restriction on the time unless you have an adverse reaction. So far my sinuses are the main issue. I got a virus which was going around and it hasnt cleared up so got a second lot of antibiotics and nasal drops and a referral to an ent consultant. I said to my gp this is a waste of time because Avastin causes problems with hoarseness etc and that this consultant cannot use his little camera when I am on Avastin. But the appointment has come in the post this morning. I have Avastin a week before the apt and I am not cancelling that since it is working so well. I will have a four week gap due to xmas. Hopefully I will be better before the apt comes around. Do you find the same ie that your sinuses are affected by Avastin or what side effects do you have if any?

  • Hi Suzuki

    I am fortunate to live in Wales in an area where my health authority has funding for Avastin. My good friend Annie only lives about 35 miles away and her health authority won't fund it. She has had to get an address in London to be able to get it. We were filmed for a BBC programme shown on local TV in October 2013. It outlined the unfairness of the so called post code lottery.

    Any way back to side effects of Avastin I do get a runny nose but it's very slight but I do have painful joints especially my right thumb joint. Also my archilles tendon is painful and sometimes it is so bad I find it hard to walk. I am monitored by research team who come and talk to me every time I have my Avastin. They check if I have been prescribed different medication and ask about any side effects I might have. I have been on it since about July 2013 and as long as I am tolerating it and still responding well I am having it as long as it's funded. One lady in our support group has been on it for two and a half years.

    Hope this helps

    Jean. Xxxx

  • Thank you for your reply, I do have the pain in my right foot, nothing major, runners and boots are great support for this time of year so I hardly notice it. Yes I am familiar with Annies posts and the great work you both have done to help others get Avastin. I didnt see that programme you mentioned but Annie is a lady who I admire so much for helping others when she is coping with her own illness. My sinuses were shot before I started chemo anyway so am being sent to an ent consultant, for a look and see. My own oncologist is okay with my side effects, its my gp who wants it checked out so have to be good and do what I am told. Wishing you well

  • Hi ,

    Some great advice - like many I was given a similar prognosis but am still around , doing well , in remission , enjoying life .. Truth is they don't know and can't predict the future but most people respond well to treatment . I have learnt the hard way that GP's who are often well meaning are not the experts and won't have seen many patients with our cancers . If you are still worried the nurses at Ovacome are really helpful xxxx

  • Thank you x

  • Sometimes you just cannot believe the insensitivity of people its obvious that they have never been in the situation that you find yourself in. There is some excellent advice on here dont be afraid of seeking out help from others, they have a lot of experience of advising and comforting you, The Ovacome nurses have been around a long time and dont mind you asking them anything they will tell you and guide you through

    any questions you may, and will have.

    Look after yourself

    Regards Barbara.

  • Thank you x

  • I feel so angry after reading your post. There is a lack of awareness of OC and PPC amongst GP's and a leading charity Target Ovarian that I am involved with are using donated monies to re-educate GP's as quoted on their website "many GP's still regard OC as the Silent Killer and still believe what they learnt in med school..." that says it all if a charity has to re-educate the professionals we rely on to be knowledgeable.

    The thing is our condition is relatively rare so they are not up to speed with the fact treatment is now much better.

    Have faith, hang on in there, you are just as likely to survive 5 years plus and within that time the targeted anti cancer therapies being licenced from 2015 are set to change all that......... xx

  • Thank you x

  • As your gp got a crystal ball

    I am stage four advanced had spread to lung but chemo cleared lung surgery cleared tumour at moment am clear twelve months after diagnosed on three monthly check ups don't let them pull you down think positive have the chemo and see what the oncologist says after chemo

    Wishing you well babs x

  • Thank you x

  • PS Have you spoke to your specialist nurse yet?

  • I have a meeting with a St Christopher's nurse on Monday. I received so much support from the nurses when having chemo last Wednesday at guys hospital. X

  • What an idiot your GP is. He/ She can't possibly know how you will respond to treatment. Everyone is different. What you need is a positive encouragement to accept the treatment and hope for the best outcome. My GP said "you're going to have a horrible 6 months" when I was first diagnosed. I replied "I know." I am not going to suggest the last 6 months have been a walk in the park but I have found loads of things to enjoy. Recently when I saw her to talk about my current situation and a phased return to work in January she hugged me because I arrived smiling. Keep your chin up girl and keep smiling, enjoy evey day snd ignore those who don't know what your future holds and have no right to predict it.

  • Thank you x

  • Honestly ! This is the second post in a week when someone would have been well advised to think before speaking.

    I quite understand why it completely threw you back when you were doing so well and had coped with the first chemo.

    The average GP will see one woman with OC once every 5 years. This goes some way to explaining why they sometimes are not too quick to help diagnose it.

    It also illustrates that its not a disease they're familiar with. Even if they were, they certainly can't anticipate the future for any particular individual. Jo-Bo's GP sounds great - realistic and supportive.

    That's part of why the Ovacome Survivors teaching Students programme is important, to try to get better informed medical personnel from the get go, and ones with some insight into the range of experience of OC survivors.

    Hoping today is better all round.

    Big virtual hugs

  • Thank you x

  • So sorry to hear of your traumatic visit to your GP. Try to just listen to positive vibes and suggestions, they will improve your quality of life and help you look forward to the spring and better days. Love Gillx

  • Thank you x

  • Your GP isn't the right person to make such a prediction. He or she was just guessing. I hope all the messages here will help you to return to the fame of mind you were in before you saw your GP.

    Love Mary xx

  • Thank you x

  • Only god knows when he will call you. Your Dr had no right to play god!! Hope is powerful! As is your inner strength! Please don't let him ruin your Christmas. Be as positive as you can. Hope and prayers to you and yours. Xx

  • Thank you x

  • It's a shame there are so many GP's like that out there. My first doctor didn't even believe I had anything other than wind pain. I would change surgery, that's what I did and my GP is lovely.

    Don't put too much thought into blase comments by someone who may have had a bad day or even lost someone to the disease. Negative energy can take over much more easily than positive energy. Concentrate your time and effort on the things and people that matter to you and do some research of your own. I joined the Macmillan online community which has a chat room, it's quite inspiring and will definitely distract you from the way you have been treated. I would also make a formal complaint to the surgery manager.

    LA xx

  • Thank you I will join the Macmillan forum it gives me much comfort and support to hear from all you up lovely ladies. X

  • xxx

  • Xx

  • Thank you x

  • Hello, I am so sorry you had that experience, this diagnosis is difficult enough as it is. Do remember that no doctor from the most general to the most specialised is really doing anything except giving an educated guess based on averages as to how your treatment etc will go. They are not able to predict the future. Each person, each cancer and each reaction/ability to tolerate chemo is very individual.

    I wish you all the best with your treatment, I hope you encounter enough sensible supportive people on this journey to make up for this difficult beginning. My mother has surpassed expectations and hopefully will continue to do ok, and a lady who she got to know from chemo appointments had had 9 years on and off chemo with quite good quality of life with OC, much longer than was predicted for her.

    Take heart, have courage, doctors don't know everything, and also can't take into account your own approach and attitude which are powerful things. I hope you have a lovely Christmas x

  • Thank you so much for your supportive comments. They really do buck me up x

  • Kim, no one on this earth knows when we are going to die. You never know, you might be the one to buck the trend. I don't think your GP was very supportive, upsetting you like that.

    I have a friend who is stage 4, she had chemo, surgery half way through treatment and then the rest of her chemo. She is doing really well and has even started back to work. She is living life to the full, has even taken her young daughter to a One Direction concert!

    Don't give up hope. A positive attitude is half the battle. Tomorrow is a new day. When you wake up, thank God for bringing you this new day. Each day we are given is a blessing. Don't let this disease beat you. Kick its ass like the rest of us are trying to do. Be strong. We will support you. Ann xo

  • Thank you Anne your words are such a positive help. I am really trying to stay strong. Kim x

  • i know its hard will stage4 becausee i am good luck too u x

  • Thank you for your kind words

  • Kim,

    I was also diagnosed stage 4 in February. The "Hospitalist" came in & said I had stage 4 OC. Being unaware of the stages, I remarked "well at least it was caught early", his response was "it's stage 4". I then made a similar response to my initial response. He flat out said, "It's spread & prognosis isn't good". I was totally devastated at that point. I went thru every emotion imaginable, but then I made a decision that this wasn't going to be the end all. I went to a wonderful oncology clinic. Everyone there was so pleasant & their focus was on doing what they could to assist my recovery. I started carbo/taxol chemo exactly 1 week after diagnosis. My last chemo was 7/11/14. My CA 125 was 16 that day, I had a 1 month check up & it was down to 11. My 1st 3 month check up was on 11/7/14 & it had dropped to 10. I know that I'm in early remission, but I just want you to know that even though you are down now & at your wits end, there is light at the end of the tunnel. Keep positive people around you, people that will help to lift your spirits. You need all the positive support you can get right now. Any negative nancies need to be kicked to the curb, including your GP!! And the tunnel you are in now, you aren't alone. You have people behind you helping to push you onward & you have others at the other end encouraging you to keep going.

    Best of Wishes,


  • Thank you for your support. I really do appreciate the kind words. Have a lovely Christmas and healthy 2015 . Love Kim x

  • Thank you for your support. I really do appreciate the kind words. Have a lovely Christmas and healthy 2015 . Love Kim x

  • I was diagnosed at stage 4 (I'm Anne's friend) and initially told there was nothing they could do after an open and close surgery as the cancer had spread to my liver, bowel, diaphragm and rectum ...... I wasn't accepting that and got a 2nd opinion, here I am almost 9 months later after chemo/debulk/chemo with no visible signs of cancer and tumour markers at 7 !

    Please don't give up hope and have faith in God. There can be miracles. I certainly feel like one of them. Xo

  • Many thanks for your kinds words. Hearing from others really does comfort me. Wishing you a happy healthy 2015. Love Kim x

  • You are in my prayers. It is difficult. I read yesterday an article from about Joey and Rory, the country music singer. She said something that hit home for me. She said when she found out the cancer was not responsive, she made a decision to go home and live. Not to die but to start living once again. I hope for the sake of my Mom, once they tell her that there is no more to do, she can make a devil to start living. I am ready to tour the world with her once she is ready.

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