Help !! is there anyone else out there been told to wait for treatment

Hi Everyone ,

little update on what's happening , or not as the case may be lol . I was re-diagnosed after only 3 months remission (to be honest they aren't even sure i was clear ) as it's clear cell cancer i have ... Difficult to detect ..

Was at consultant the other day and they say i still don't need treatment (At the moment) , .. i was told to be aware of any pains in my back as the re- occurance is in my lymph nodes in my spine ... i have now been having pains in my back , so told her at last appointment but according to them it's not where the cancer is , sdo not to worry , so as u can guess I am now worrying myself over whether it has spread elsewhere , my next appointment is not till Feb so I've to have a scan before i go back so they can check on things and compare it to last one i had which was exactly 6 months ago , now the onc has said that even if the cancer has spread , she still doesn't want to do treatment straight away as i'm still feeling well (apart from back pain ) ,

To say that my head is thinking all sorts is an understatement i'm worried they leave it too long , really don't know what to think at the mo .. not sure what u guys can say or do to help me here apart from is there anyone out there who has been told the same thing !!

16 Replies

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  • Dear Shazican

    This really isn't what you hoped to hear. I'm really sorry it's all become so worrying. You know you can ask for a second opinion if you're not confident in your local hospital. If I were worried I think I'd do that. It's certainly a horrible place to be.

    Hopefully someone else on the site will share a similar experience and will be able to reassure you. Know exactly what you feel about being told to 'watch out' for pains. That's like checking in the mirror to see if I'm a woman.

    Let's hope others will be able to advise you better than I. xxxx love Annie

  • Hi, I can't believe they do his to us....... It's like asks how long is a bit of string.... My onc has said several times he won't do treatment if I am fit otherwise, but then I've had a problem with fluid, so he has had to. They say that the longer they can wait the better, why pump us full of poison before they really need to!! In some ways I can see their logic, but if we are only having 6month checks how can they know. I know my cancer is fast growing, so when I think something is happening I get it looked at. Your GP should be able to help keep things sorted, but after they told me where my main problem was I found it easier to discard other aches and pains. If you really think there is a problem phone your specialist nurse, or the consultants secretary and get an earlier appointment.

    Meantime make the most o f the remission, and stay positive. Enjoy Christmas .

    Love n hugs

    Viv

  • Hi Shazican

    I have heard of quite a few doctors and oncologists opting to leave treatment quite a while until there are more symptoms. (This has been when I have been acting as a patient rep on an NHS gynae cancer steering group, so I a'm sure it's the current best practice.) I know it seems baffling. If you're still worrying, and I can understand you worrying, why don't you give Ruth a ring on 0845 371 0554. You will get up to the minute and knowledgeable advice from her. As Viv says, try to stay positive and relax as much as you can

    Love Wendy xx

  • Thanks Wendy i might just do that , i am positive 98% of the time ,so much so that i just moved house and getting married in Feb , but every now and again that odd doubt creeps in lol x

  • Thanks Ladies , i have no reason to doubt that my consultant is telling me the whole truth so don't think i need a second opinion , as she has told me from the very beginning that if it was back and that they would be talking about containing it rather than curing ... and unfortunately that's the result we got back .. it just seems strange knowing that i'm sitting her with cancer and no treatment is being done , i feel ok and accept it most of the time but just some days i have a dip and feel i don't know where i am with it all .. and unfortunately today was one of those days .. Sorry , but it's great to have ladies like yourselves out there to ask these things to cos i feel i don't want to upset the family , with seeing me strong i think it helps them cope ... x

  • Hi Shazican,

    Just to say I had symptoms for over a year before my oncologist decided to give me a scan and then said it doesn't usually come back there...but I have since had treatment ie more chemo...and I am now in remission.. and have been in remission for nearly a year now ...so my guess is that there doesn't seem to be a rush...best wishes love x G x

  • Help your self while waiting for treatment do the Dr. Joanna Budwig diet on line amazing I have been doing it for 2 months and frozen lemon one a day.My tumors have shrunk back cant feel them now healthy diet worth a try love Jenny xxx ps no chemo.just above regime

  • Hi Shazican,

    I can understand where you are coming from. After 6 cycles of carbo/taxol and TAH my post op/chemo showed that the tumours left on my bowel and diaphragm were the same size as before the last 3 chemo. I feel fine (and look well) so no further treatment as I am asymptomatic. I don't want anymore chemo if I'm feeling fine. I had very few side effects but you don't feel your best on chemo. I was diagnosed stage 1V. If I can stay as I am now, I shall be happy.

    Good luck with the house move AND the preparations for your wedding, look forward to hearing all about them

    chin up

    Chris xx

  • I asked my oncologist about another friend with OCCC. He said a trial of the kidney cancer drug sutent was underway/about to finish - this was over a year ago. He said there had been some 'spectacular' results. On the Inspire site I read that women in the US with OCCC are beginning to be prescribed Sutent. Everolimus has also been mentioned. It might be worth asking if you could be considered for either of these drugs if your onc thinks it appropriate.

    As for waiting, as far as I can see it is controversial. A large, well conducted study showed no real difference in results, except that quality of life was better in the group who waited for symptoms before being treated. But it seems that a number of highly experienced oncologists disagree.

    I would want treatment sooner rather than later, but that's just me. I suspect the quality of life advantage the study found may be diluted if women know they are in recurrence.

  • Hi Shazican,

    I don't have OC myself, but my mum was diagnosed a few months ago and is currently in chemo. I am only responding because I happened to have had an in depth talk just yesterday with her Onc about this issue (among other things). She said it has been proven that waiting to start chemo only when actual physical symptoms appear is just as effective as starting it when it's first discovered through a scan or blood test. The difference is that your quality of life is better when not on chemo, and also, the longer you can go between chemo treatments, the more likely your body is to respond well to it. She did say that it's a toss up between the 'quality of life' and the (quoting her very words:) "psychological torture" of knowing it's back and not acting on it. I can only begin imagine what you're going through, and I expect "psychological torture" is an apt phrase, but it sounds like you're staying as positive as possible, you have a lot to look forward to with the up-coming celebrations, and I wish you all the very very best. xx

  • Hi Shaz

    This is exactly the position I am in, however I am getting scanned every 4 months. It is a really difficult position to be in and your natural instinct is to think that it must be better to try and get rid of all the cancer as soon as possible and that by delaying treatment you are tempting fate or missing an opportunity. I am classed as having 'stable disease' because the cancer is growing very slowly and I have no symptoms. The good news is that this has been going on for 3 years now and my onc is still saying no treatment...YET.

    Angelag's mum's consultant's comments about 'physcological torture' are spot on. In fact when I was having a nervous breakdown over this very situation at the beginning of the year, I was offered chemo. However once I realised this was being offered for my mental state and not my physical state, I decided not to take the chemo.

    I am feeling a lot better now and I think this is just down to a change in attitude and acceptance that this is the way its going to be. I do have the odd wobble or that horrible feeling when waiting for scan results 'what if its bad news?', but to be honest I think even when I was in remission sometimes the fear just gets the better of you.

    I take comfort from thinking to myself, I am not in intollerable pain, I am not unable to do anything, I do not have acsites, I go to work every day, I exercise and live a normal life, so if it had suddenly started growing a lot more I would know about it.

    I did find that it made me put off doing things as I thought I may be starting chemo at any point, so it is lovely to hear about your house move and the wedding plans. We will be expecting you to post pictures of the wedding :) :) :)

    Vx

  • Thank u so much Vicki for ur encouraging words , because i haven't had a scan yet to check on progression i think that that is what is always at the back of my mind , that at the moment all i know is its there but we have no idea how slowly or quickly it is growing or if it is at all ... so once i get my scan in Feb , at least i will have an indicator of how things are ... It's just so gd to hear that u have been like that for so many years it gives me such hope that i could possibly have the same chance ...

    Ur so right about the thankfulness of not feeling ill, i do have the aches and pains in my bones , but nothing that can't be helped with my pain killers , so ur right things could be really be a lot worse , and i do live my life at the moment as normal as possible , i'm still out working every weekend entertaining people with a smile on my face . No-one would ever know that there's anything wrong with me ... and that's gd.

    In new house now , move went well , Just Christmas and wedding planning going on now , keeping my mind busy lol ,

    Pics to follow xx

  • You are very welcome!!!

  • Thanks all for ur encouraging words , feeling better now about everything , Thanks for being there xx

  • Hi Shazican. I,too have been told to wait for further treatment. I had a scan two weeks ago after my ca125 was raised from 17 to 31. I have been in remission since march 2012 after debulking last oct followed by carbo/taxol. My post chemo scan was clear in march. My latest scan shows nodules growing in two different places. Onc told me not to worry as I am feeling well,working and generally getting on ok. I was told that in these circumstances they prefer not to treat until there are symptoms. I have to go for another scan in ten weeks time to see how it has progressed. I really don't know what to think and my husband is confused and worrying terribly.

  • Oohh Iris , Thank u so much for leaving a message .. it's horrible eh , U really don't know what to think or feel .. I have been fine all the way through my op , treatment , even the news that i wasn't clear but find i'm having more down days now , i think it's just as the keep emphasizing that the earlier its found the better , but in our case they know it's there but they are choosing to wait .... ur lucky that u are getting another scan in 10 weeks to check on progression , the last time i had a scan was in July and they are not doing another one till Feb ... Exactly 6 months Between the 2 , i can see why they are doing it but was told i had to watch out for pain in my back as mine has moved to the lymph nodes at my spine , i am having pain in my back but they say its further down than where they say i should be feeling it .. so that's where my panic begins .. has it spread elsewhere , so can't wait for Feb to come to hopefully eliminate that horrible thought ... Sending hugs to u and ur husband , i hope u get gd news at ur next scan and it hasn't progressed too much .. Hope u have a great christmas and new year when it comes xx

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