Mastectomy & axillary lymph node dissection

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Hi There,

Having had a lumpectomy and sentinel node removed for testing recently, we were told this week that cancer was found in the sentinel node and that they had not managed to remove all cancer cells from my breast as it had spread.

i have been given the choice of a wide lateral excision or a mastectomy, I am choosing a mastectomy. They will remove all of my lymph nodes at the same time. I will also need 6 months of Chemo. Devastated on a number of levels but trying to keep busy, think positive thoughts and be proactive.

My queries are:

- I am told the mastectomy recovery/pain is not too bad, but with the ALND at the same time, will this be the more painful bit? How long can i expect to be out of action.

- what can I expect the scar to look like? They seem to vary when I look at pictures online. Do they sometimes leave skin to aid a reconstruction at a later date? Will this be discussed with me? 

- what sort of bra can I wear to support my other breast when I have just had op? I can’t imagine I will be able to wear a prosthetic immediately?

- my biggest fear is that they are going to test remaining lymph nodes and we are going to be told cancer is found in all of them. I cannot imagine how I am going to face going to that results meeting as the last two results meeting were full of bad news. Very anxious.

-  How long will it take me to get my head around this latest news, it’s been 5/6 days now and I am struggling.

  • Hi.  I'm sorry to hear this news. I had a mastectomy and lymph nodes removed 8 weeks ago. They found 8 out of 16 contained cancer cells. I found  the pain was tolerate with taking normal pain killers regularly. Sleeping was my biggest problem as i couldnt get comfortable lying down, so I slept downstairs in a chair, keeping upright. Collecting of fluids is normal and they drained it for me a couple of times, but you might have a drain put in.  I found lifting my arm was painful above shoulder length other than that taking it easy helped.  I went back to work 6 weeks ago . 

    Yes they leave skin for reconstruction if you want at a later date. A good supportive bra, but I found because of the bra line it was right on the scar made it sore. So I didnt wear any for a few weeks. I'm still waiting for prosthetic as it has to be 6 weeks, but they do give you a soft shape to use. It helped having shape there for me. Only just looked at the scar recently and it wasn't as bad as I thought it would be. I caught glimpses before and yes I was upset but it that's because of the bruising and swelling made it worse. 

    To be honest I'm still struggling getting my head around it and I'm waiting for a date to start chemotherapy and then radiotherapy to follow. Alo g with other medication.

    Talking to people who have been through it helps and keeping your mind busy. 

  • Hi just coming on to say hi. I’m not sure I can specifically help with any of your queries as my ride is slightly different to yours but there are amazing ladies on here 6-12 months ahead of us who have made it through and are cancer free and loving their “new” chest in whatever form they have chosen to take it, their new lovely hair and doing amazing things they wouldn’t have pushed themselves to do before going through this Sh&t. 

    I know we wouldn’t choose it in a million years and I totally related to how hard it is to process. After being told I probably needed chemo on Friday I was literally hyperventilating. It just takes time to process stuff.

    all here for you xx

  • Hi CSMLT

    Sorry to hear that you'll be needing further surgery. I know it’s such a worrying time and a real challenge dealing with all the changing and sometimes devastating news. 

    I had a mastectomy and lumpectomy 12 wks ago, with SNB. As for discomfort, mine was mostly fair to middling but sometimes severe.  Nights were the worst, I just couldn't get comfortable! I did buy a wedge pillow from amazon, which helped. I slept fairly upright for the first 6wks.

    I also spent a small fortune in search of a comfortable bra. I probably should have save my money!  The challenge for me was having different needs on each side as well as scarring from the node removal,  it was a lot.

    I think the key might be to accept that it will be somewhat sore for a few weeks. My best bra finds were the front zip up soft bra from Sainsbury's at £10. I still wear those indoors and sleep in them too. It has a pocket, so the softie can also sit inside. Also the non-wired front zip up t-shirt bra from M n S is perfect for me. It is extremely soft and though it doesn't have a pocket, a prosthesis can sit snugly inside, as it has a full cup. I will be getting some pockets stitched in. 

    After 6wks you'll be able to wear a proper prosthesis.  I was only recently fitted and mine is on order. But I did buy a couple in the meantime. I really like this one:

    My scar needs tidying up, as there was a pocket of skin left behind, in error I guess. It has improved in appearance though, as the swelling and bruising receded.  I'll be joining the list for delayed reconstruction, following treatment. I'm currently having chemo, round #2 of 16.

    I think it does take time to absorb everything,  especially when things keep changing. I'd encourage you to be gentle with yourself, allowing yourself plenty of space and time. I find that gradually my thoughts and feelings are falling into place, as the weeks go by and my treatment plan is brought into reality. 

    I wish you safe travels through your next surgery. 

    Hugs, Shaka

  • I 100% agree the changes are very destabilising. One almost wonders why they don’t just tell you everything up front …… but even just writing that kind of makes me realise that it’s all so much to take it that I guess they just tell us on a need to know basis. Which is probably quite sensible!

  • Yep, I think I might have lost it if they'd handed me all the info in one go!

    Thinking back, my surgeon did mention from day one that there might be a possibility of mastectomy and chemo. There was no way I was ready to hear that back then! 

  • Totally right . I guess they have done it all literally probably 1000 before

    kund of reassuring I guess?!

  • Thank you so much for your response. The recommendations are really helpful as I want to get organised now and not wait until I after the op when I may not feel up to it. It’s the first time I have used this forum and it’s so nice to have people who fully understand what is going on in my head and have helpful advice. I am sorry you are going through this too. I haven’t thought too much about my chemo yet,  but I wish you all the strength in the world to get through yours xxxxx

  • Thank you this is so helpful. So having 8/16 nodes test positive, did this change your treatment plan again or was chemo always going to happen? Did you have a CAT scan? I think that depends on the % of nodes that are positive, but I have no idea what that % is. I will ask that tomorrow as I have a follow up meeting.  How long were you off of work? Just 2 weeks? Or 6 weeks, sorry I may have misread.  Yes this is the first time I have used a forum and it is SO good to feel you are not alone. It is such a shattering time when every bit of your life and plans are blown to pieces, as well as the effect on those closest to us. I have two teenagers so trying to keep it all together for their sake. Thank again and sending you a big virtual hug xxx

  • Yes I got the three things I didn’t want them to say- chemo, another op and that is in my lymph nodes. It was like being punched in the face, in slow motion, three times…..I was shaking and didn’t eat for three days. Until now, I normally get my head together after a few days but this hasn’t quite happened yet. I couldn’t/can’t sleep which really didn’t help my mental state. I am now taking medication to help with this and it is helping my daytime mood also. Thank you for response, you are right, many brave souls have come out the other side and we will also xxx

  • I totally relate to keeping it together for those around us….. it’s tough. Trying to imagine a time when it’s not my last thought at night and first in the morning. Assuming I sleep that long!!

    it’s very good to have people who understand to talk to and amazing to have the benefit of people experience