PICC palaver and recurrence

Hello all,

I had a PICC line on Tuesday and seriously think this is the thing that might push me over the edge. It hurts, the dressing pulls my skin every time I move and keeps coming off, and the dratted tubey bandage thing keeps rolling down. My arm is wider at the top, not straight, for Pete's sake. So was fussing about all this and going to speak to them tomorrow when I was due for chemo cycle 4 - carboplatin only.

But the consultant called today to say I can't have chemo as my latest scan, which was to check the ureters and stent after they accidentally cut it during surgery, shows 'things that weren't there before'. Obviously I asked what and he said 'something' on the liver and the pancreas. He said not having the chemo tomorrow won't make a difference, which sounded ominous to me. I'm going in on Monday to discuss it and being referred for and urgent CT scan.

Could it be a recurrence before first line chemo is even finished (Had ovarian Clear Cell and adenocarcinoma in uterus and endometrium, all removed) or simply that the first scan didn't pick it up as it was in a different area? What chance that it's nothing serious - I just laughed out loud. What happens next? I've been having a lot of what I thought was IBS in last weeks, but perhaps it's this 'something'.

I need to vent I suppose. Gah. This is annoying.

15 Replies

  • goodness that’s not what you want to hear but maybe they want to revise the drugs to deal with it - the waiting game is always difficult but it’s good that they are addressing this if the carbo isn’t working. Fingers crossed it’s just some tweaks to treatment for a better result. Will be thinking of you x

  • Thanks. I'm allergic to the taxol and have been worried since the beginning about only having carbo. Thanks for encouragement. Xx

  • Hi Melongirl.

    Like you I'm on carbo only with avastin. I had taxol once and taxotere once and they nearly killed me. I have been anxious about not having the tax drugs but my oncologist - and Lily-Ann - assured me that the carbo will do the job.

    Saying "don't worry" is a bit futile as of course you are worried. Some days I'm convinced that I'll beat this cancer and other days I'm convinced I'm going to die next week. It's called the emotional rollercoaster and we are all on it. At least you have all the support from us here and fingers crossed you can give us some encouraging news when you get some results.

    Good karma coming your way. I'll send it through the channel tunnel as it's quicker....

    Love Kryssy xxx

  • Thanks for this. It is great to have this support and to be able to ask questions and vent. I've decided to 'not worry' 😳 until I know for sure what the 'something' actually is. Meanwhile my friend brought me some mince pies and I tried on wigs yesterday. Such fun! And rugby to watch. Hope you're having a good weekend. Love Kate xx

  • The only time my dressing stayed on was when the nurses in the oncology suite did it.

    The community nurses were not so good at it-perhaps they did not do many.

    I had no pain or discomfort from it so perhaps they should check it out for you.

    Take care and all the best for your appointment xxx

  • Thank you. I'll get them to check it for me.

  • Good luck with your consultation on Monday and your urgent CT scan. As you say, it may be that the first scan didn't pick it up or it may be that your Consultant wants to change your drug routine.

    No experience of PICC lines but it must really add to your frustration.

    Best wishes for Monday!

  • Hi, You can vent as much as you like,you are having a hard time of it, the good thing is your

    consultant is on top of the situation and as he said I don't think not having the chemo for a few days will make a differences.

    I've not had any experience with a picc line it does not sound very comfortable, I've had a port for over 2 years now and would not be without it , can you be offered a port ?.

    I hope your scan is very soon if only to set your mind at rest and get you back on treatment.Take care Lorraine xx

  • Thanks. I'll ask about a port. Of all the things that have gone on since I was diagnosed in August, the PICC is the thing that's annoying me most.

    I'm relieved that they seem to be on it now. Roll on Monday. Have a good weekend xx

  • I'm so sorry to read how you feel. It must seem like an eternity until Monday. Your piccline should settle down soon. Your probably a bit tender from having it put in. Hopefully you'll come to be glad you have. I hated not having my piccline for my last Chemo. I was so black and blue with all the attempts to get a cannula in. Maybe you need a larger size tubey bandage, they come in different sizes, and the sort I had had different colour stitches to denote which size they were. My first one drove me mad as it was too big.

    Hope things aren't as bad as you fear on Monday. Love, Solange 😊

  • Thank you. I'm so grateful to be able to vent to people who understand. And it might not be as I fear, the 'something' they saw could be anything.

    Have a good weekend. x

  • Hi there, you need some TLC. Your dressing shouldnt pull. It needs sorting out. I went to Boots & bought a plastic arm bag so i could bath safely. I know it costs over £1000 to fit privately so it is quite a bonus to have a picc line. Thinking of you. Anthea

  • Thank you.

  • I was due to start the ICON8b trial but was told on the day that there was a tumour near my lower bowel so I couldn’t have the Avastin. Turned out there wasn’t a tumour there - so I had the Avastin a bit later. It seems that reading a scan isn’t an exact science and although I trust all of the professionals treating me, I guess that things can be missed or misinterpreted. I have had a haemangioma - like a red birthmark - on my liver for years which is always mentioned in my scan reports, although apparently it is harmless and irrelevant.

    I find out on Wednesday whether my most recent scan shows any disease progression - just starting to feel anxious, so my sub conscious is giving me all sorts of aches, pains and lavatory visits!

    As the other ladies have said, at least this has been picked up and will be investigated, so I hope all is well on Monday.

    Best wishes, Ali x

  • That's encouraging thanks. I've decided not to panic yet. It could be anything as you say.

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