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Sister's avatar
Sister
Member
7 years ago

Mixed Feelings from Surgeon Review

I had an appointment with my surgeon yesterday - the first since finishing active treatment.  I went in knowing it was just a review and I had my usual list of questions with me.  I'm not really sure how I feel, now. 

Earlier in the year, he didn't really want to discuss too much with me about reconstruction and he seemed to be dismissive (the word sounds too harsh so probably isn't the right one) of the possible need to consider taking the other breast.  My concern, as I talked to him yesterday, is that it was almost impossible to see on the mammogram and on the CT Scan, and it was much bigger than had been thought and had spread to the nodes when it didn't appear to have from the scans.  He told me that that type of mammogram I will be having (in November) is much more powerful than what I had at Breastscreen.  But he also said that he could understand my anxiety and that he would be happy to take the other if it got too much for me (he actually said something along the lines of knowing that stats are just stats in the end and if he was in my place, how hard it would be).  He said that an ideal time would be during reconstruction.  Now, I'm still unsure about reconstruction but one of the reasons is cost.  However, he reckons his gap is about $500 which surprised me.  Although if I go ahead, it will be a flap procedure and he will bring in a plastic surgeon.  That's still down the track to consider.

The other thing I found out yesterday is that Letrozole should provide about 70-75% protection to the other breast for the time that I am on it.  Maybe I was told that before but I certainly don't remember it (definitely possible).  

What has really sent me reeling is that during discussions, the surgeon pointed out a word on my path report that I had not taken in - pleomorphic.  I was fairly happy with my Grade 2, Ki 67 <10 result.  I didn't pick up that pleomorphic means that it was a fast growing cancer.  It was probably only there for 12 months, maybe 2 years at the most.  I remember the onc saying something along those lines but it was brief and didn't really register.  That scares me even more as the tumour got to 4.5cm and started spreading within the time frame of usual scanning and it was barely visible.  I think I'm in a slight state of shock - more than I usually am.

Apart from all of that, the surgeon is really happy with my progress and he also wants the port out as soon as possible so I'm going in on Saturday morning to have it removed - Yay!

As I said, really mixed feelings about this review.

15 Replies

  • From what I can gather @arpie, the pleomorphic is on top of the ILC diagnosis - I guess being faster growing is what helps the lobular move a bit quicker, and we know lobular is sneaky enough, anyway. 

    It is pretty terrifying to think that this could develop in such a short time frame and be so hard to detect as it does - and I could never feel anything.  So, I guess I'm thinking that I could have a you-beaut scan, be clear, 6 months down the track a cancer starts, have another scan after a year and the cancer not be found, then another scan 12 months later - that would make it 18 months from the cancer starting until it was picked up...maybe.  On the other hand, the thought of putting my body through any more is overwhelming.

    You're right @kezmusc - you think you knew what was going on and then something is pointed out to you and you realise that you had no idea.

    @afraser I'm trying, I'm trying...but it depends which 10 minute period you catch me in.  I can be feeling positive and sure that this is behind me then fall into the pits of negativity and wonder how long I'm going to be around.

    On a positive note, I met my Manager off-site this morning for a coffee and she has filled me in on what is going on and reassured me that they are happy to work around me as needed when I go back next term - 3 1/2 weeks time...terrifying...
  • Oh dear @Sister, I feel your anxiety!   Great news that the port can go & that the Letrozole is also protecting the other boob too!  ..... So your cancer must have been Lobular, like mine?  

    I've just found this site that is an interesting read, specifically on Lobular BC, even tho it is American!
    https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/lobular-carcinoma-in-situ.html

    It has this bit about Pleomorphic:
    Pleomorphic means that the LCIS cells look more atypical under the microscope than the usual case of LCIS. Necrosis means that some of the LCIS cells are dead. LCIS with either of these features (when compared to LCIS without them) may be more likely to grow faster and to spread, and is linked to an even higher risk of invasive cancer. LCIS with either of these features may be treated differently than most cases of LCIS.

    I am thinking that it is another term for 'invasive' - which I was told was a faster growing one?  Do you remember them telling you yours was Invasive (or seeing it on your Path Report?)   Mine was Invasive - but the word Pleomorphic wasn't mentioned?  

    It could just be a pathologist who enjoys using the 'fancier words'?  

    Gosh ... deciding on whether to have the other one off or a recon on this one ..... Big decisions.  TBH, if I had had a mastectomy, I wouldn't have a recon - as to me it is just more invasive surgery impacting my body.  But it is a very personal decision & one that only you can make & have to be comfortable with.  The Plastic surgeon's gap mightn't be so low, either!  

    Did you have a MG or U/S leading up to this review (on the other boob?)  Not long til Nov now, tho, I guess.  Nov was when my lump was found!
  • Hey @Sister.

    The whole thing is just a state of continuing confusion isn't it?  You find out things you hadn't really heard at the start or had bigger things to worry about at the time and it  just starts the ball rolling again. There appears to be no end to the anxiety and worry.
    The concern that the machines don't pick things up is disconcerting as well.  You're always thinking "what if it missed something".  
    You will probably know that I had 4 or 5 (can't remember) mammograms and a few ultrasounds at the beginning and not one of them could pick up the breast tumour without the MRI pinpointing where it was.  Even then it just looked like a few little sparkly bits on the scans once they had the exact location to look. Without the node thing, I would never have felt it until it was too late I guess.

    Reports are scary as you don't really know what everything means.  I have taken to asking "Give me that in dumb terms please" lol.  The good thing is that it may have been what it was but now it is gone and stomped into the floor.  

    Take some time until you feel a bit better before worrying about any other surgeries. Easier said than done I know.
      Some days are just too foggy to think about those things.

    Yay for getting the port out.

    Lots of love.
    xoxoxoxxo


  • My tumour was pretty fast growing too, but 6 years on next month - so far so good. We all just want the whole business to be over and done with. But it's not that sort of disease. Even if nothing ever happens, we have crossed a line. We know that it can happen once and therefore might happen again. It does get easier to accept (particularly if you remain OK!) but it also takes a bit of work to accommodate that changed state about yourself and your mortality. Optimism about the world can be regained, one step at a time. Losing the port is one of those steps!! Be happy. 
  • It’s a lot to take in isn’t it. My (new) surgeon doesn’t think we need to remove my left boob as it all feels normal and there was never anything found in that one - obviously she will keep a close eye on it - have to book for my first ultrasound and mammogram before I see her again in February. She also bought up reconstruction which I am in 2 minds about. If it’s not perfect it will annoy me more than having nothing there and I’m not sure I want scarring in other parts of my body that are more visible if they need to take tissue or skin. I have decided I’m going to go for a couple of consultations and see what I think. I’ll save that for next year though - 3 surgeries is enough for this year. Cost is also a concern for me. So much to take into consideration!!