I went to Leeds today to meet with Dr Perren who was a kind and considerate man. I was impressed that I didn't have to wait around for hours to see him. He explained that it had taken so long as he had wanted to undertake a complete review of my notes before meeting with me.
He broadly agrees with my diagnosis and my staging although he was sceptical that I ever had any high grade cells (he said that was a matter of professional opinions). He agrees that the mass in my pelvis doesn't look malignant but you can't be 100% sure just based on a scan/MRI.
I mentioned that I am suffering with constipation again, peeing frequently and my tummy is just generally sore most of the time and I feel like a beached whale.
He agreed that I definitely had a belly and asked if that was normal for me. However I don't know what is normal anymore and half the time I think its in my head but when I was last in Weston the bloke commented that since he'd known me that my stomach had got bigger and asked if I'd put much weight on. That's the thing really my weight has been hovering around 14 stone for the past 3 months some weeks I'd gain a lb and then the next week I'd lose a bit so I haven't really put on lots of weight.
He examined my tummy and gave me an internal. He couldn't feel any lumps but he did agree it was tender and that isn't normal. They took my bloods whilst I was there and I have to phone up for the results on Tuesday. He was also going to recommend to The Christie that they have me in for a chest, abdo and pelvis CT to look at the bigger picture. He doesn't agree with me being on HRT his experience in Leeds is that lower grade cancers are more prone to oestrogen dependency but I shouldn't rush into a decision without discussing it with my medical team first. He also mentioned in Leeds that they often treat low grade cancers using hormonal therapy and they they would be doing some research in other non-chemo therapies particularly for low grade cancers later in the year so I might consider asking if I can go on the trial.
I'm having my gall bladder out next week providing my blood tests are ok and he suggest I should ask the consultant doing that procedure to have a second look whilst he is there and to biopsy anything suspicious. He did say that of course he or she might refuse.
He stated that I wasn't curable but in all likelihood I will probably still be here in 5 yrs
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ScardyCat40
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I am so glad that your second opinion went so well...he certainly sounds as if he knows what he is doing...I hope you feel more confident about things now...I know it is not easy for you and know what you mean about a big tummy...I can't remember what is normal now either but I hope things are on the way up for you...I am sending my best wishes love x G x
Like Gwyn says, it's good to have a broad confirmation of what your original team told you, and the further options may be really helpful. It certainly seems well worth asking the gall bladder surgeon to 'have a good old rummage around' as my surgeon put it. It may give your team some more info. Or rule out some possibilities...........Whatever, it may also be worth discussing your options with the Ovacome nurse team. They may have some experience of situations a bit like yours. Whatever happens, you will be wished the very best of luck from all of us on here. It's time for some good luck for you now, I feel it in my bones
Thanks Wendy it was good to hear about other options. Having a chat with Ruth or one of the MacmIllan nurses I know might be useful as I'm not sure what happens now..........like is my consultant obligation to follow the advice from my second opinion?
It was good to hear that your consulation went well and it was lovely to see you yesterday in Leeds, good luck with taking this further with your team, do you have a clinical speciliast nurse to talk it through with in how best to approach your team?
It was a pleasant surprise to see you as well and I hope treatment went well. There are CNS at The Christie but I only became aware of this after I made a formal complaint about having to wait 5hrs in clinic to see someone and lack of communication with my GP. Its not clear what their role is
We have a telephone number for our CNS nurse, generally I text if I know what I need help with. Otherwise will ring and most of the time it goes through to answer phone and told that I will be called back but maybe not same day. That is my experience but it does vary. Hope this helps in the last couple of weeks lost control of my symptoms management and my CNS nurse referred me to community MacMillan nurse who visited me at home and I have better control of my nausea xx
I saw Tim Perren last year! It was he who agreed to stop the cisplatin, which was not being effective and was making me feel ill, and took my case to the MDT who recommended surgery. I was on his Icon6 trial earlier last year but taken off because I became allergic to Carboplatin. I am hoping that I see him or David Jackson next time I need chemo as I trust both and they have an international reputation in dealing with ovarian cancers!
If you were sent there we must live in the same general area! I was referred to Leeds when first diagnosed as, in 2009, all gynae cancers were dealt with there but newly diagnosed now would, I think, have first line treatment in York. I can, however, as I was first treated at Jimmie's, opt to have any future treatment there and I probably will. I have such confidence in all the consultants and nurses there!
I live in Manchester and I was really impressed with the clinic and Tim Perren but it was just for a second opinion. What are the weight times like there? The Christie clincis regularly run at least an hour behind
I always allow a full day when I go to clinic in Leeds! They can run as much as 2 or 3 hours behind. I take my cross stitch (I made loads of Xmas cards last summer) or my crochet, my crossword and ipad (now kindle - much lighter) buy a sandwich and coffe from the costa in the atrium and settle in for a long wait. I do not mind because not one of the consultants rushes one. When I jhave needed time I hav been given it so I do not mind having to wait because other people need time and it throws the appointment system. The consultants always stay to see everyone and I have only once seen someone below the level of registrar! Tim Perren was on a radio 4 programme about cancer research earlier in the year!
The nurses used to joke with me about my accoutrements but I crochetted a tunic and matching beanie hat plus a load of glittery juliet caps to wear with my scarves on my first round of chemo. last lot was the cross stitch (less bulky to carry!)
So good to hear your 2nd opinion went well , he does indeed sound a good guy and you must have been impressed that he wanted to a complete review of your notes and case .
hi, i have been reading your blog this afternoon and would appreciate it if someone could tell me something about the clinic in leeds or the christie clinic, My mum has just been diagnosed with cancer and we are desperately searching for anything to help. My thoughts are with you all who are suffering or have suffered this as i am just realised how difficult it is
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Second opinion recommendations please
Going for second opinion at Royal Marsden
Second opinions how do you get one
undecided should I ask for a second opinion
