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

  • Hi MickeyM

    I think having surgery the week before Christmas didn't help my situation. I didn't see my surgeon again until 9 days after the op. 

    On 5 Jan my surgeon was on annual leave so I saw a specialist breast doctor. This was when I expected just a check up again, not my results.

    On 12 Jan I saw my surgeon, he's an oncoplastic breast surgeon. He told me my margins aren't clear enough and that he thinks i should have another op.

    Next week, 19 Jan, I have my first appointment with an oncologist. This will be to discuss the results of my Oncotype test, assuming they have them by then of course. 

    The same day I will see my surgeon for additional checks on my infection and wounds etc and to discuss what's to be done re the margins.

    I am unsure how these 2 appointments will overlap. If I need chemotherapy or radiotherapy who explains it all etc..  presumably the oncologist who I've not yet met.

    From the start I was told i would need radiotherapy, but this week it was suggested that if I have a 2nd op I might not need radiotherapy afterall.

    In terms of chemo I've been told I'm in the 'grey' area, meaning I'm somewhere in the middle of whether it will or won't benefit me. Presumably my Oncotype score will decide this.

    I'm hoping everything will be a lot clearer after Wednesday and that I know what the plan is. 

    Really good to hear you've only had minor problems, and yours was an even bigger surgery. Wishing you the best outcome when your results come through xx 

  • Is it possible to ask to have both the surgeon and the medical oncologist in the room at the same time, at least for the part where surgery is being discussed? I nearly had that when my after-surgery appointment co-incided with my medical oncology appointment, I asked and was told we could do it this way. In the end it didn't happen because the surgeon was called urgently elsewhere, but they were willing.

    If you do end up needing radiotherapy, there will be a clinical oncologist to deal with that, but they all stay coordinated via the MDT.

  • Good thinking GreyCats. That hadn't even occurred to me. It certainly wouldn't hurt to ask. Thank you x

  • Hi Pangles, 

    Thank you so much for such a detailed response. 

    It’s so much for you to take in and on top of a ghastly infection too. I’m sending massive virtual hugs your way. 

    I hope that your oncotype score is back in time for Wednesday and that you are given a detailed plan as to how they will take this forward. 

    I can’t even get my head around what they’d do surgery wise now you’ve got the implant, so I’m really hoping it’s all fully explained on Wednesday. 

    Please keep us posted how you get on. 

    Thinking of you, hugs Mickey xxHeart

  • Hi MickeyM

    Surgery wise my consultant said that he would remove more tissue and just replace the implant!  He made it sound no bother at all. I havent a clue in reality. Time will tell I suppose. Thank you and hugs to you too x

  • Hi, 

    Fingers crossed Fingers crossed that it is quite straight forward as he has assured you. I’m glad he’s at least talked you a bit through it. You don’t need anymore complications that’s for sure. Roll on Wednesday. Virtual hugs Mickey xxHeart

  • Another week on, more fluid drained, and more antibiotics given to try and clear up my ongoing infection/swelling.

    2nd operation to go ahead on 7th Feb to take a bit more tissue as well as some skin, to hopefully get a clear margin.

    As long as this is successful I won't need radiotherapy afterall.

    Also had meeting with Oncologist and was told I won't be needing chemotherapy. My Oncotype score was 15, and they said they only recommend chemo when the score is above 25.

    So for me, it's been a good day. After a week of everything being up in the air, it feels good to have a new plan. I am feeling cautiously optimistic.

    Best wishes to everyone, especially those who've not had a good day, because I have been there too Two heartsTwo hearts

  • Hi Pangles, 

    Thank you for the update. I hope todays draining and further antibiotics are enough to clear up the infection for you, I’m keeping my fingers crossed for you. 

    Im pleased you’ve got a date for surgery and that you won’t need chemo and no radiotherapy if successful. Fingers crossed again. Did they talk through the specifics of the op with you? 

    I feel cautiously optimistic as well today, haven’t had my full results yet. But a BCN did confirm that my case was being heard at MDT today and that all 3 lymph nodes they took were clear. They found another tumour though, but I don’t think that will change my overall plan. Back to waiting to see what this means re treatment plan going forward. Hopefully I’ll know on Monday. 

    I have dabbled with the NHS predict tool based on what I know it doesn’t think I’ll need hormone therapy or chemo (doesn’t cover radiotherapy though). Interesting as I’m hormone positive and they’ve told me I’ll need hormone therapy definitely, so that’s up for discussion for sure. 

    Take care Mickey xxHeart

  • Thanks MickeyM. He talked very basics re the op. There's never enough time at these appts! Just seems a shame that just when this infection might be sorting itself out, I'll be back for another op and have my scar re-opened. Anyway I just have to accept it, and in the scheme of things I'm fully aware it could be so much worse.

    That's wonderful news re your clear lymph nodes. I hope you do get confirmation of what's next for you on Monday. Fingers crossed for you too xx

  • Yes that’s really tough Pangles, I just hope it sorts it all out, infection included - fingers crossed. 

    Thank you, we really do need to celebrate any good news on this rollercoaster  xxHeart