Bit of a blow..

Following my left side mastectomy on 20 Dec, I received the positive news that my cancer had been removed and my margins were clear. 

Fast forward a week and I start to feel lots of swelling and the whole reconstructed breast felt tight and sore and hard. Very scary when 3 weeks post op I felt I should be over the worst. I see my consultant and he says it's possibly an infection. He drains some fluid from the tissue and the implant, and injects a load of antibiotics. 

Then we sit down to look at my pathology report and he tells me my margins aren't clear enough! I had left the previous meeting (with a different Dr) on a high, so this was a real blow Disappointed

I go back next week to be checked again, see an oncologist for the results of my Oncotype test, and then my consultant to check on my infection and confirm whether I need a 2nd operation to get a better margin. 

I am learning that this disease and all it's different treatments can be so unpredictable; a positive can quickly change to a negative; and it's not uncommon to receive conflicting information. That being said I am still so grateful to the NHS for getting me to where I am, and I am trying to be positive and focus on healing..

Thinking of everyone who is struggling through the various stages of this horrible disease xxx

  • I’m so sorry Pangles, what a blow. On top of having pain and an infection, no wonder you’re really feeling it. The thought of another up must be devastating. I’ve got everything crossed for your oncotype test being more positive news, massive hugs to you xx

  • Thank you Anna. I really appreciate having contact with others who understand. I just read your bio and gosh it looks like you've been through the mill a bit already Disappointed

    You have your op next week I think? I hope it all goes well really for you and massive hugs back to you xx

  • Thanks! Yes on Thursday, part of me is dreading it but part of me is happy to be able to get another step out of the way. None of this is easy is it!? Xx

  • Anna, I felt exactly the same. It must be normal!

    Immediately after the op I was so emotional. I didnt get back to the ward until 8.30pm so it was already late ish. I lay awake the entire night feeling so vulnerable and alone... despite the half hourly and then hourly checks!! I don't mean to scare you in any way, just saying honestly how it was for me. The next day I think I was overwhelmed with relief that I can come through it ok..

    I'll be thinking of you on Thursday then, and the days afterwards as you recover. It really isn't easy. Baby steps, take any help you are offered, and be kind to yourself Heart

  • Don’t worry, I like to hear people’s genuine experiences without the gloss, we all have people telling us ‘it’ll be fine’ it’s good to hear reality. I’ve been in touch with a few people who’ve had the diep and they’ve been generous enough to share their honest stories. It helps for me to know the truth. I hope you get some positive news x 

  • Hi Pangies, I’m really sorry to hear this too. I had right masectomy on 14th Dec with diep reconstruction. I’m still waiting for my results. I have contemplated lots of things, despite trying to remain positive. I must admit though I hadn’t even thought about not having a clear margin on a masectomy. I’m really sorry to hear this.  Had they already sent off for your oncotype test before you got the surgery results? 
    Also sending positive virtual hugs to you Mickey xxHeart

  • Thank you MickeyM

    I have to say I was shocked to get my results on 5 Jan. I thought I would just be having a wound check and that it would be at least another week before results came back. When the dr just went straight in to the results I was completely thrown off balance and my mind went blank. He didn't mention margins, I asked. He basically said you had a mastectomy, we took it all, nothing to worry about. My view was I have kept my skin and nipple, so I wanted to know they were 'safe'.

    Anyway I asked again the following week when I met with my consultant who carried out my operation and he said my margins aren't clear enough. I only have 0.5mm clear, and a quick Google says 'a surgical margin of more than 1mm after mastectomy should be recommended'.

    So I wait again until next week and see what the update is. I have provisionally been booked in for another op during the first week in Feb... just when I had hoped I would be getting back to work.

    It was only at my appt on 5 Jan that I was asked if I wanted the Oncotype test. I said of course, yes please. They suggest I will have these results on Wednesday.

    I hope you are recovering well, and I hope you get good results when your time comes - next week presumably Heart xx

  • This is the kind of thing that really makes me angry. I would demand to know how come you were given contradicting results by different doctors. I too have been given contradictory results at some point, the result was a shouting episode in the corridors that I was later told made someone cry. I am not all that pleased about making people cry, especially if that was a patient, but the doctor at the receiving end deserved every bit of it. Someone at the home end was stupid enough to tell me, "they won't like you so much," to which I replied, "I don't need them to like me; I need them to fear me." This is not the kind of person I normally am and not how I started with them, but at the end of endless small and large incidents, that's where I found myself needing to be.

    The resaon I am even mentioning it is to try and say, demand explanations for the obvious contradiction and make it clear you won't stand for anything other than complete, accurate information. Do not let this complacency/negligence on their part go any further.

    I hope the infection clears up soon and that everything from now on goes smoothly for you.

  • Hi again Pangles, 

    I can totally understand your shock. Can I ask (as I get confused) when you got your results on 5th Jan was that with a breast surgery consultant? And the following week when you learnt that the margins aren’t clear was that your Plastic surgeon who told you that? Which one are you seeing next week to find out more about the provisional op and for the results of the oncotype? I’m glad they at least offered you that and hope it’s good news?

    Thank you, I’ve had a few minor problems with Seroma and a part of my tummy that wouldn’t heal and was a bit gunky, so far it’s been good news. My results are due by phone Monday 24th, I’ve just been given an extra apt with my Plastic surgeon though on Friday 21st, so I am unsure if that is linked with my results? 

    What day do you go back next week? Massive hugs Mickey xxHeart

  • Hi GreyCats

    Thank you for commenting. I think in the meeting I was just a bit in shock and unable to say much. I'd also already been in the room for about 45 minutes while I was drained, injected with antibiotics, and then drained again, due to my infection.

    By the time we got to sitting down it was all a bit rushed. I went home feeling awful, and spent the whole of the next day feeling awful too. Then y'day I was a bit better so I called my designated Macmillan nurse and told her all about how I was feeling. Unfortunately she hadn't been in on the meeting, as she'd been needed elsewhere. Anyway, it made me feel much better to get it all of my chest and have my concerns validated. She said she would feed it all back..

    I will try to be more prepared next week and will have my boyfriend with me who will certainly speak up if needs be x