I wish they would make up their minds

Thank you for all your support regarding last weeks blog and reoccurence. I phoned up The Christie to see if I could find out the outcome of yesterdays MDT meeting. No one is available to speak to me as they are all in clinic this afternoon as I'm going away again I called my MacMillian Nurse at St Mary's as one of the team usually attends the meetings. She called me back and it now seems like following the meeting they now think that is is a post operative cyst in my pelvis and it seems like the outcome is to have another MRI in 3 months. My CA125 is now down to 35 I know it sounds weird but when my Mac nurse told me this I didn't feel happy I felt the opposite I felt upset. My 'friend' thinks its just relief because I'd prepared myself for having surgery as that was what I was told by my consultant and I have a copy of the MRI scan as well. I've also told my family as well and worried them for nothing - should I ask for a second opinion?

I'm hopefully going to get a call from my consultants colleague who also attended the meeting and then I can find out if my GP is now allowed to refer me to get my ball bladder sorted.

I'm a bit pissed off.

21 Replies

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  • Oh poor Scardycat! You have every right to feel pissed off. I suppose the only thing you can say is that they are keeping you informed as the situation changes .....not that that helps you :-(

    I would give the helpline a ring about whether to get a second opinion, but, to be quite honest, Christies is pretty cutting edge, isn't it? Are they going to keep monitoring your CA125, I would request that ......also, is there now a suggestion that they won't need to operate until they sort your gall bladder out? I can understand how frustrated you feel, not sure whether you are coming or going :-/ maybe waiting till you get more details is the best course. Just wanted to say sympathies and send a cyber hug. ((((xxxx))))

    Love Wendy xx

  • Hi ScardyCat,

    It really is the uncetainty of it all..that is making you upset..I remember when I was first diagnosed and was sent to a specialised unit..after being told I had cancer.. they were now saying it might not be..it does send you on a roller coaster..I am sure they were trying to break it gently to me and erring on the cautious side thinking it made me feel better..but after untelling me they at to tell me all over again.. which then caused others to jump on the bandwagon and say "see it might not be cancer" it really is a terrible feeling and you do wish they'd make up their mind..my thoughts are with you love x G x :-) (a smiley face anyway)

  • I'm sure you are! Whether it's your interpretation, or their description; 'they now THINK it's a post op cyst' would be the reason, I expect. How do you trust that what they think is what is actually happening? Having said that, your ca125 might be the clue to it, and that is within range now. A second opinion is an option, but first I hope the Consultant's colleague gets back to you as soon as possible, and puts your mind at rest.

    I don't think you have been very well served. Why did no one ring you yesterday?

    Sorry you are having this worry, but I hope it all turns out well.

    Best wishes,

    Isadora.

  • MDT isn't until the afternoon and goes on quite late. I was also travelling back from Weston yesterday evening so they wouldn't have been able to get hold of me. I am angry that no one was available today to call me. I'm doing a race this evening so I'm unlikely to be home when clinic finishes this evening.

    Its been such a roller coaster and in spite of it being The Christie I sometimes feel like they don't know what they are doing because my cancer is more unusual.

  • Hi ScardyCat,

    Can't you give them your mobile number? It is good that you have a life enjoy your race..love x G x 8-)

  • There really is no point Gywn as I don't carry my phone when I'm racing

  • I've had a chat with Ruth and following all the uncertainty I'm going to ask for a second opinion just to put my mind at rest because I've lost confidence in my team and the whole process.

  • Hi ScardyCat,

    Good! no harm in that..and it will put your mind at rest..I wish you well love x G x :-)

  • Hi Scardycat

    A second opinion sounds like a good idea, as you say to put your mind at rest. Not at all surprised you are feeling upset - as soon as you get used to one scenario, the goal posts change! I think you are being hugely brave.

    Moniquex

  • Ok I spoke to the consultant this morning they have reviewed all my scans with the surgeons and radioligists from St Marys and in light of my falling CA125 they have come to the conclusion that it is more likely to be a cyst following surgery and that these are quite common so they have decided to monitor it. It actually appears smaller on the MRI than it does on the CTscan.

    However I told him how I was feeling about the whole process and how stressful it had been and about losing a bit of confidence so I've asked for a second opinion and I'm being referred to Leeds. It just feels like a huge weight has been lifted off my shoulders. I appreciate they are more likely to come to the same conclusion. I can also go back to my GP about my gall stones as well.

  • Hi Scardycat

    What a terrible time you have had !

    It is a really good idea to get a second opinion, the last thing you want is unnecessary major surgery , buy you don't want any situation to worsen. It makes you wonder what planet some people are on that a whole team couldn't find time for one person to ring you.

    However it is really good news that your CA 125 has come down and is now normal. How did your race go ?

    Lots and lots of love

    Charlie xxx

  • I took out all my frustrations at the race and I was only 15 seconds slower than last time but I had enough energy to kick on the track at the end and overtake someone at the finish

  • ScardyCat,

    Well done.. and I am glad that you have managed to get you point across..when my family wanted me to get a second opinion.. my son came up with Leeds as it is a top hospital for OC so you have done well going there..I didn't bother in the end but it is nice to have a backup.... my friend who is a consultant said it is not a problem to them if patients want a second opinion as ait is the patients right to do so... and he doesn't know of any consultant that would be offended best wishes love x G x 8-)

  • I did have the option of being referred to London as well but wanted to keep it reasonably local and just hearing you say that has made me feel it was the right decision. I have met one of the CNS from Leeds at a Target Ovarian event and she was lovely.

    Just been told I'm seeing the breast specialist at Wythenshawe next Friday

  • hi

    i fell so sorry for u going thru this, its stressful enought without extra hazzle.

    wishing u all the best

    luv

    shenx

  • Hi Scardycat!

    Well done for keeping going with the race and having such a good time in it. Also well done for sorting out a second opinion. I am sure it will put your mind at rest. Leeds does have a good reputation. I was born in Leeds and lived in Yorkshire for my first eight years. I love it there and often return to visit my cousins. Just wanted to offer you a word of support, and wishes that things are not as bad as you fear at the moment. Good luck with the breast specialist. Let us know how things are going

    Love Wendy xx

  • Hi ScardyCat,

    I hope everything went well for you today at the hospital thinking of you love x G x :-)

  • They moved my appointment to Tuesday so I haven't been yet

  • Wishing you all the best for today, and hope you will be seen quickly love x G x 8-)

  • I've had a breast exam and a mammogram now waiting to see the doctor for the results. I'm glad I don't have to wait a week for the results

  • Well it didn't quite go how I was hoping. They found 3 lumps in the breast one of which is definitely benign. One looked suspicious so I had it biopsied under ultrasound and there was one at the back of the bread that wasn't visible on ultrasound so had to be biopsied under xray. Feeling a bit sick and I've been told to take it easy for the rest of the day. I'm away tomorrow for the week so will get the results on the 10 September

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