Living with incurable cancer - patients only

This group is specifically for anyone with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here, without fear of upsetting those in other groups.

Scan results

No. of entries: 17 | Posted on 11 Feb 2013 8:11 AM

Scan results

  • Hi all, I go to see my doctor this afternoon to get my results from the ct scan I had a week ago. Hopefully the cancer not spread too far and there is more treatment options for me. Fingers crossed, I will let you all know after tonight xxxxxx keep strong and keep fighting peeps xxxxx
  • Good luck today Heidi, yes let us know how you get on.

    Pam x

  • hi heidi,

    really hope all went well with your scan results today (((( hugs )))

  • Fingers crossed for you Heidi xxxxx xxxxx surprised I can type!

  • Hi Heidi,

    How did your results go.

    Pam x

  • Hi all, sorry for delay in replying, been a hectic week. I had hospital and my eldest daughter who is type one diabetic been ill and I had builders in all week doing adaptations to my house for my youngest daughter cos she severely disabled, so it's been a long week. I went and saw my oncologist Monday just gone and he said my tumour markers in my blood are back really high again which indicates the cancer is upto something. I had a scan two weeks ago and the scan shows the cancer has not really changed since my last scan in November, so he said, he won't put me back into treatment just yet as the tumour markers rising high, is not enough evidence on there own to warrant treatment, so he said he will see me monthly and rescan me in may, and depending on what the scan says, depends on whether I go back into treatment. but since Monday, I have had a lump appear in the base of my neck on the left side, so went and saw gp on Friday ( yesterday) , the lump is an enlarged lymphnode. So the gp has sent a fax over to my oncologist telling him about this lump. I also spoke to my macmillan nurse yesterday and she said to try not worry about it, as it is probably the cancer that has made it enlarge, but sometimes they can just go up and down for no reason. So she is going to speak to my doc and see what he wants to do, but she said she thinks he will probably biopsy it. So right now feeling a little low, feel like I could cry, but I can't. I just keep thinking to myself, how long have I got until they say they can't help me Anymore, ya know. I know I shouldn't be thinking these things, but you can't help but have these thoughts cross your mind. I have also been feeling rough physically, my whole body just aches all the time, I don't know if this is the cancer or a result of the treatment I have just finished. Thank you all for asking how I am, it means a lot, cos a lot of the time my family just avoid talking about it and how it is affecting me. I think it's because they are in abit of denial. Xxxxxxx
  • Hi Heidi

    You are bound to feel a bit low in the circumstances - blimey, if I were you I'd be feeling pretty stressed just through having the builders in & your daughter poorly, never mind all the cancer sh*t to deal with. I hope the lymph node settles down. It sounds good to me that your oncologist feels more treatment is not warranted at this point, but is going to keep a close eye on you.

    Not sure which chemo regime you've been on, but some can cause flu-like bodily aches & pains. See if you can get some pain relief if you can. Get as much rest as you can, though I appreciate this could be difficult with four children! 

    It is only natural to worry about the day they say there's no more they can do. I am fortunate because I now have the hope of surgery, which I was originally told was unlikely. So most of the time (except when chemo is making me feel a bit crap) I am very positive now. But I still know that if the chemo stops working & the tumours start to grow or new ones appear, that could all change, and it's hard sometimes to put that to the back of my mind. I try to just take things one day at a time & be grateful for the new hope I've been given.

    Sending lots of love & positive vibes your way,

    G x

  • Hi MiniG, hope you don't mind me asking and I won't mind if you don't  want to go into detail but what surgery are you going to have and did you clinical oncologist suggest the surgery?  Reason is I am having a bit of a battle with my clinical oncologist at the moment re surgery on a growth in my pelvis, she says it would be too invasive, too massive etc.  I wouldn't like to think she is writing me off and what she really means is too expensive :(

  • Hi Heidi, sorry to hear you are feeling low, and know exactly what you mean about the family being in denial thats why I come on here when I'm at work!  If they saw me on here they would tell me off for being pessimistic! :)  They are very supportive and I know they say what they do because they love me so much.  I am feeling physically crap at the moment as well aching etc it is the chemo and the steroids but I only have one more cycle to go then a three month break so that keeps me going.  What I try to do is take each day as it comes and do what I can on that day so if I feel crap I do less if I feel better I do a bit more.  I am going to look into compimentary therapy like reflexology and such can't harm and having someone rub my feet for an hour sound lovely to me!  and sometimes I feel like being 'babied' if you know what I mean?

    Hugs xxxx

  • Hi Heidi,

     Oh dear you are going through alot atm, am sorry hope things improve soon.

    So your onc is putting off treatment for awhile, think as you are feeling rough it is a good idea, let your body recover a bit. Your dr's seem to be on the ball.

    I do know what you mean about how long you have till they say they cannot help you, I feel like that atm , I have had 6 mths off chemo, my lung mets have grown , so chemo did'nt work, but onc says I can go 6 mths before another scan and to see him. I just wonder if he is giving me quality time instead of quantity if you know what I mean. My hubby wants me to be checked in 3 mths so am going to do that.

    I like chatting on here too about how I feel etc, as you know someone is going to listen and understand what we are all going through.

    Sending you a hug and positive vibes,

    Love Pam xxx  

  • Hi Jeccy

    The surgery will be a liver re-section - ie they will remove part of my liver.  It is very major surgery so a bit scary!  My oncologist was very negative about the prospect of surgery, though he did a referral to a liver surgeon at another hospital because apparently that is "routine".  They do this kind of surgery mainly on people who have secondary bowel cancer in the liver, whereas I have secondary anal cancer which is much more rare.

    I too felt my oncologist was writing me off.  But when I saw the surgeon he had a completely different attitude. There isn't a lot of data to say if surgery will give me a better outcome, but the surgeon says that is simply because there are too few cases to learn much from statistics. He says there is equally no evidence that it won't give me a better outcome! He thinks it is well worth doing the surgery, if things continue to go well with the chemo.

    My oncologist had previously given me duff info about surgery - I developed an anal/vaginal fistula during radiotherapy for the original anal tumour, and he told me I would have to have a permanent colostomy or live with it!  This turned out to be way too pessimistic. When I saw the colo-rectal surgeon she said it would be a temp colostomy & I would only need a permanent one if the fistula didn't heal and they weren't able to repair it successfully.  In the end it healed up on its own & I never even had a temp colostomy!

    So I would say ask if you can be referred to a surgeon - even if the surgeon agrees with the oncologist, at least you will have heard it from them. If you are able to do this financially, try and get the initial consultation as a private patient, to speed things up.  With hindsight, I would have done this, as I waited months to see the surgeon in the end. Also, the surgeon wanted me to have a PET scan, but when I saw him he said there had been a "funding issue" (which basically means my NHS trust wouldn't pay for it). This now makes me think the oncologist did not think I was worth the cost of a PET scan - which would explain why he was quite vague & evasive when I tried to chase up the scan with him!

    Hope this is helpful

    G x

  • Yes very helpful, I have never been a pushy person and now when I feel at my lowest (physically) I find that I am continually having to turn myself into this sort of person, it is hard feel like I am walking up hill through treacle most of the time and having to question everything I am told :( when what I would like to do is relax and be able to trust that everyone (professionals) will do the best for me, but sadly this isn't the case Ive found.  So I will see a surgeon privately but I will get my last session of chemo out the way first, cos I am knackered! :)

  • Hi MiniG,

    Good luck with surgery, am sure you will do well , and great the liver regnerates itself, I think.

    I keep thinking about what my onc said about not being able to operate or have laser on my lung mets, do wonder if I should see a lung surgeon or not, I want to believe my onc knows what he is talking about, but when I read your message am not so sure now. Mine were tiny at first but just keep growing, and yet he says I can have another 6 months off chemo. It is hard to know what to do for the best, as I don't really want more chemo if I can help it.

    Makes me so cross when people cannot get scans, when they need them, it should.nt be about money grrrrrrrrrrrrrrrr.

    I wish you all the best Mini with everything.

    Love Pam x 

  • Hi Jeccy,

    Am sorry you are having to be pushy now, but if the surgeon will operate it will be worth it.

    Not sure if you read my post to Mini G, but as I said I am not sure whether I should see a lung surgeon, to see what he thinks.

    Good luck with everything , let us know how you get on.

    Love Pam x 

  • Yes the liver does regrow, a lady I see at The Christie has a whole new one now!

    Pam, I don't know if you remember me telling you that nobody will operate on your lungs if you have spread elsewhere? However if you feel the need to ask a surgeon go ahead, just to settle your mind.