Told nothing?

Was diagnosed on Xmas eve ovaries are contained secondary in soft tissue spleen were major,6every 21days of carbon/taxol last one next week ,ca125 was 40.8 on my third chemo,but I developed a blood clot on injections every day for six months ,old oncologist told me after last chemo that was it just going to monitor me ???????I was happy with him or his lack of information so I am changing him .As I told him I am only 48 not ready to give up ,feel like I am on the cancer conveyor belt Ann x

20 Replies

  • I am sorry that you feel your oncologist isn't very communicative, my oncoloigist says very little too.....but over the years I have got to trust him as being experienced in his chosen field... .many people that I know couldn't handle the lack of communication and changed their oncologist.

    However the procedure for most of us after treatment has finished is to monitor... It is a pity that you feel that you are now being ignored... It can be very worrying (and natural to feel this way)

    I wish you well with your new oncologist... but don't be surprised if the new one works in a similar way.

    Best wishes love x G x

  • Thank you Gwyn for kind words and advice .

    Ann x

  • Dear Ann,

    After reading your further comments, I have a feeling that you have the same oncologist that I have....I am coming up to six years now and although my oncologist is reluctant to say much (and believe me every one complains about him) he is however a very experienced oncologist... and I think he knows what he is doing... one member on this forum was with him fifteen years and had twelve lines of chemo... I speak as I find.... I have had other friends who decided to change oncologist but are no longer with us...they swapped my oncologist for one that was perhaps more approachable and certainly spent more time with them... now I know everyone is different but I went with my gut reaction even though others tried to persuade me to go with someone else... Just thought this might help ( in my opinion he does know what he is doing) xx

  • Ann,

    The end of first line treatment can be awful. You can get a lot of support going through diagnosis either from Macmillan nurses or your CNS and then you have the routine of treatment and then at the end you can feel a bit abandoned and be thinking what now...... As Gwyn has said it is normal to feel that you have been through a lot.

    For some women returning to work and their daily routine helps but don't feel you have to rush back to work. Others myself included have found it helpful to talk to someone about the cancer and how it makes you feel whilst others have become involved in campaign or voluntary work.

    Speak to your GP or CNS about what support is available in the community are there any local support groups or is there a local cancer centre you could be referred too? I had some complimentary therapies at my local hospice which helped a little. Now might also be a good time to take a holiday.

    After treatment we all go through monitoring every three months for the first two years some oncologists like to check your bloods, others rely on symptoms and some routine scans. These follow up appointments can become stressful in themselves the fear of reoccurrence is always at the back of our minds.

    Try and be kind to yourself and do what you can to help your recovery. Eat a balanced healthy diet, try some light to moderate exercise and try to avoid stress there are some techniques you can learn with your breathing that can really help. You may find it useful to set yourself some goals.

    With regards to changing your oncologist I would not rush into this. If there is anything you need to know best to ask them a direct question maybe take a list of questions and someone with you to your next appointment. However you may find it helpful to go for a second opinion both your GP and onc can help you with this.

  • Thank you for being so under standing ,have not been told at what stage my cancer at 3or 4 has been said but not been told by the oncologist,the Macmillan nurse have only told me about wigs and cns I never seen . Ann x

  • It is possible that the Macmillan nurse might be a CNS (clinical nurse specialist). Ask your consultant what stage you are you can contact their secretary and she should be able to tell you or get someone to phone you back. They should also write to your GP so you could ask your GP to find out. Where do you live - I don't mean your address just which town/city?

  • Runcorn but all my treatment is at Liverpool women's hospital or clatterbridge and the oncologist can even keep my GP up to date .annx

  • Hi Ann. I know how you feel. I was diagnosed as 3b last June following surgery and was then thrown into the rounds of pre assessment clinic appointments and then chemo appointments the next day so I felt like I was being well looked after. My chemo finished the week before Christmas ( had delays in treatment due to low WBC count). I had scan appointment 30 Dec, an appt for results 14 Jan, a genetics appt 20 Jan and nothing since. My GP carried out my CA125 for me in March, 3 months after previous test and it had gone down. I have got used to not having appts. I have worried about twinges etc but my GP has advised me that this is normal for me to feel like this. I currently await a review appt with oncologist.

    My ontology team are very nice. I am sorry you are having difficulty with yours. As Gwyn has said, they have your best interests at heart, they are very experienced in their specialist field and know much more about the various drugs etc than we do. It might just be your cons manner to be quiet and perhaps focus more on the positives than have you dwell on any negativity. As we all know, having a positive attitude to this disease is in itself a big help to fighting it.

    Thinking of you. Ann xo

  • Thanks for kind words and shearing your own experience ,my oncologist has give me on information at all he has not told me what state my cancer is at ?,

    surgical team said 3 the oncologis registor said 4 .The nurse who looked after me after my biopsy told me that my ovaries were contained and the cancer was in my spleen,soft tissue and peritoneum .Annx

  • Ann, I was only told of staging after lab results were received. The oncologist told me I was stage 3, I stopped her at that point as I was not ready to hear whether it was 3a, 3b or 3c. I went through as all my chemo and o ly actually found out it WS high grade serpouse stage 3b in Jan this gear when I went for genetic testing.

    Have you asked your own GP, as your oncologist has to keep your GP in the loop. Ann

  • He has hardly kept them up to date had to go to doctors on Friday ,having a reaction to the fragmin injection and they asked me what was happening told then by 3chemo CA125 was down to 40.8 and they asked me to do one for them because they only had the first one when I was diagnosed . Annx

  • I have just re-read your initial post. I note your CA125 was down to 40.8 after 3 chemos. You have since had another 3 so I am sure it has gone down further. Mine was at 21 just before final chemo in December. By mid March, it was down to 15.9. Don't lose hope or faith. Ann

  • Hope and faith and my family is all I have at the moment,also this is helping .annx

  • Dear Ann,

    See my comment further up I think we have the same oncologist,

    My GP isn't kept up to date either the reason being I live in a different area to the health trust so they do only have minimal information because of this xx

  • Hi Gwyn thank you again for advice,and I know wot you are saying right ,I did not what him to be my friend or to counsel me,but just to answer my questions about my cancer .annx

  • It is like getting blood out of a stone, but I have become more asertive over the six years, I try not to get fobbed off... (it's not easy) I am seeing him on Thursday :-(

  • Good luck for Thursday . And will be more assertive x Ann

  • Hi Ann

    Welcome and so sorry that you are going through a difficult time so soon after the shock of the diagnosis. You have had a very very recent massive trauma and this will take a very long time , as in up to two years to get over.

    What I would suggest you do is write a letter to your doctor listing the questions you have. Letters are taken seriously as they immediately become part of your clinical notes. So there can be no misunderstandings . Alternatively if your GP is good he or she could write on your behalf.

    As the other ladies have said above this is often a worse time than when you have been diagnosed. I am obviously not a doctor but it is highly likely that the surgery and chemo killed off everything to do with the cancer.

    You could also ask that all letters to your GP are copied to you. If so again , do this in writing , and ask them to confirm that they have received your request and have auctioned it.

    You have paid tax all your life and will be doing so for many many years, you deserve decent care.

    If it's any consolation I was diagnosed 4 and a half years ago and still feel that I am improving....didn't need chemo but did have a second massive laparatory a few months later.

    Do take care of yourself xxx

  • Thanks you have all been so kind and helpful and I feel very humble that you have taken time to reply to me x. .My GP has been very helpful with me changing my oncologist ,I know we must be an other body to these doctors and I do understand they need to keep their distance , but mine has a God complex ,when you are told you can not have surgery to remove the cancer and you ask why and you told because of the blood clot that ,your GP has said your body has all ready taken care off and your on fragmin to stop any more .And you ask is this the surgical team decision because you have not seen them since the beginning,still he will not answer so push how far has the cancer regressed (you know your CA125 is down to 40.8 )and he still will not tell you so in the end he walks out saying he going to consult with the surgical team ,but goes in the room next door where you can hear him laughing as he makes a joke as he enters the room ,carries on talking about his morning and how he was called the grey hair OAP doctor then laughs and then says to the person in the room ,what do you think of that !!!!!!!the male voice reply it is big Op ,walks back in the room stone face in front of my husband my daughter who is 23 and me and says

    No the surgical team no way.Do I have faith in doctors ?

  • Dear Ann,

    Reading your comments (contrary to what I wrote earlier) I think the only way forward for you is to change oncologists, if there is no confidence in your oncologist and treatment then it is best to move on, because at the end of the day it is your life...and part of being able to recover sooner is to feel that you are in safe hands and I don't think you are feeling this at the moment.

    Best wishes love x G x

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