MRI results threw a 4th curve ball

Hi all,

MRI not fully analysed yet but got some results today.  The lump that I found (which oncologist wasn't worried about) he is now concerned about as it looks cancerous.  The other 3 tumours that the CAT scan showed still look nasty.  However the MRI showed another two tumours but these are on my right hand side in the armpit.

Radiotherapy has been postponed (was due to fly out tomorrow for planning meeting) as they said they wouldn't know where to start or what to treat given 6 tumours so spread about.  Oncologist is at a bit of a loss now.  I already had the 3 "Googlies" (BRCA2, HER2+ and node involvement) but apparently I now have a 4th Googlie, metastases.  Admittedly I thought there were only 3 Googlies so I'm unamused to get a 4th one.  He says there's a slim chance the 2 on the other side are a red herring but he isn't pinning any hope on that as they look like cancer on the scan.

He just can't fathom what my body is doing.  The largest of the 6 tumours is 4mm but none of them were on the MRI scan taken back in May.

The good news is that my heart looks fine so he is going to add another drug to the Herceptin and go really aggressive on that front as he thinks my heart can take it.  Given all the knock-backs and the fact my mum is allergic to Herceptin he has decided just to assume I'm allergic, can't say I blame him as we don't seem to be getting any positives on this journey.

He's speaking to the Consultant Radiologist to see if it's possible to biopsy one tumour on each side, it may not physically be possible even with ultrasound.  But even though it's likely the tumours on the right are cancer I guess we need to know that they are the same cancer and not a different one that's just happened to occur now.  Either way they're looking to start a new chemotherapy next week which will be before the results are in.  Not ideal but something is growing incredibly fast and since it is likely cancer we can't exactly sit around I guess.

He's going to phone 3 or 4 friends for a second opinion, he also has contact details for someone he referred to as "one of the good and the great" (which I take to mean 'renowned') to get their input into my case.

So em yeah, I have absolutely no idea what's going on now and it seems no-one else does either!

Cancer... when being unique really isn't a good thing.  Grrrrrr

LJx

  • Hi Jolamine,

    Thanks for your thoughts and prayers, all very welcome.

    They'll be dealing with both sides on Monday and all they said today was that they would be removing the superficial left infraclavicular node that I can feel, and one of the right axillary nodes.

    On my right-hand side (the side that would make the cancer bilateral) there are two suspicious nodes.  He didn't mention it but I guess he might remove both while he's in there, if he can see the other one.  On my left-hand side there are 5, 1 of which is really conveniently located and the other 4 are quite spread out but all near to vital arteries etc.  The point of this is really to know if we are dealing with cancer spread (as they were sure we were and are still sure we are but the biopsies came back clear!) or if something incredibly weird is going on.  Anyway, once we know what we're dealing with radiotherapy is back on the cards and all the LHS ones are within the area that radiotherapy would treat so I don't think they'll go digging around trying to locate them.  But you never know.

    Had to laugh.  They'd examined me etc. Got the other surgeon in to examine me also as mine "will be away off-island soon".  That's all good.  So then they go to the diary to see when they can schedule me in and say "Oh, we could do Monday, is Monday okay?"  I said yes of course, so then they are all "great, we'll get that sorted for Monday, see you then. Have a good weekend, bye."  Here's me standing at the door going "errrr... you know today's Friday, so where have I to be on Monday and when?" :D  Could see me just randomly showing up at the Day Surgery Unit at 7:45am (the earliest they take people in) having not eaten or drunk from the night before just in case I'm on the morning list.

    Right, better go discipline the in-laws bitey but very cute little puppy before my slippers require CPR!

    LJx

  • Hi 

    Just catching up-unbelievable what is happening to you!

    I send all my positive vibes to you, a very remarkable lady.

    C x

  •  

     

    Hi LJ,

    Let’s hope that nothing incredibly weird is happening with you and, that it is a straightforward diagnosis.

    I can just imagine you standing at the door of the day surgery unit at 7.45 on Monday, uncertain if you were due there or elsewhere.

    Last I heard about you and dogs were the problems you’ve been having with your brother-in-law’s dog, visiting his parents. Have your parents-in-law now got a puppy too and, how are you coping with this?

    Now that you know where you are going and at what time on Monday, let’s hope that these specimens taken come back clear too.

    Kind regards,

    Jolamine xx

  • Hi LJ,

    Finally got my oncologists app through for 6th February to discuss the second primary.

    Will be thinking of you on Monday.

    A x

  • Hope all is going well/has gone well for you today. Thinking of you!

    G x

  • Hi you wonderfull amazing lass ...

    Just caught up as been with my grandkids for a few days ... l think wer a lot on the same page ... what will be ... and it will not take us easy ... well get those well worn boxing gloves and punch it right back ... how dare it a ...

    Well everyone's routing for you ... you got so much support and admiration here ... you go girl ... 

    Sending you one of my special nanny hugs ... cancer touched our bodies..  so we'll kick it's *** ...

  • Thanks. Glad you don't have too long left to wait for that DragonFly. I'm back in the waiting game now they've taken the nodes out for analysis.  Forgot how annoying the wait is :D  Even find myself desperate to start chemo again (remind me of that when I'm vomiting!!!!)

    LJx

  • All done.  Nodes removed and back home.

    Turned up at the hospital at midday, was put in a 6-chair bay which was full.  Tried to make conversation with the other patients but it turns out they were all pretty deaf so trying to talk to them was exasperating (safe to say I brought down the average age in the room by rather a lot and I'm not even that young!)  Was funny though, they all had arrows drawn on their heads so I guess it was eye-surgery afternoon.

    Got home by 7.  Pain is in the correct places so no worries about erroneously amputated limbs.  Think a stick might have been helpful for the axillary node dissection but bit late now.

    Hopefully back at work on Wednesday.

    Thanks for all your thoughts and prayers, you're a cracking bunch :)

    LJx

  • I am following what is happening to you but don't know enough to make any sensible comments  Just think of us all doing a King Canute and saying to the nasties "You will back off" and giving them fierce looks.  Just wanted you to know I am thinking of you.  Annie

  •  

    Hi Dragonfly,

    I'm sure that you are glad to have this appointment through at last. I hope that all turns out ok.

    I have had 2 bouts of breast cancer in the past 9 years. Fortunately, both turned out to be primaries of the same sort of breast cancer.

    Naturally, I thought the worst whilst I was waiting for the results and had convinced myself that it had metastasised - what a relief when I was given the results!

    Kind regards,

    Jolamine xx.