Had mastectomy and reconstruction 1 out 3 lymph nodes positive panicking

Been 3 weeks since surgery and found out yesterday that 1 of the 3 lymph nodes taken showed sign of cancer. Options I have now are finding out if I’m menopausal or peri. I just don’t know, my gynaecologist doesn’t know. Had blood test to find out. 

If I’m still peri will have to have more surgery to remove auxiliary nodes, has anyone else had this? 

If I’m menopausal then radiotherapy to arm, which I will be having to breast anyway.

Also probably have adjuvant chemo.

Feel like I’ve gone 10 steps back and it’s really knocked me down back to all the anxious feelings


Hi Cazy , sorry you had bad news , it’s a rollercoaster isn’t it during the first few weeks .I hope you have a clear treatment plan soon so you can begin to get your head around what happens next .Best wishes Jill x

Hi I had the same thing happen this week (though post lumpectomy not post mastectomy). I wasn’t expecting it at all as surgeon had been very upbeat about my situation so I thought I was on the downhill stretch with “just” radiotherapy and hormone treatment to go. Its been a real shock and from feeling very positive I’m much more upset and anxious again - also back to not knowing what the next few months hold which is tough too. I’ve not done a huge amount of googling but I did a bit (I work in research so looked at some papers) and I think the one out of three is relatively good news (compared to more than one - obvs zero would have been preferable!). I’m post-menopausal (just - by a few months) and not being offered further node biopsies which is good in some ways as lymphoedema was one of my worries in all this - but it has left me anxious about what might be lurking in other nodes - it felt so good post surgery to know the tumour had gone.

anyway - sending my very best to you I totally get the 10 steps back feeling xx


@Cazy214  I am really sorry that your surgery showed up a positive lymph node. I found myself in a similar position.

At ultrasound, I had been told I had two tumours, the biggest measuring 35mm with no obvious lymph involvement, then after surgery, was advised it was three tumours, the biggest was 55mm and 1 lymph node was positive. I was totally knocked for six and then started to take myself down a path where I was convinced it had spread (which a CT scan confirmed it hadn’t). However, I totally remember that feeling that just as I had got my head to the ultrasound findings, it changed and that worry of what else they were going to find was awful. It made me very nervous at attending appointments after that because I just thought what are they going to add this time - how much worse can this get…

I did have an axillary node clearance as a result and out of 17 nodes removed, 1 more positive was found, so 2 out of 19. I would have preferred none but at least I then knew what I was dealing with. My chemotherapy and radiotherapy was then based on the actual histology findings rather than what they thought after the scan.

Now nearly a year on from diagnosis, I can see they needed that information and of course things can change as new information comes to light. I just wish someone had told me that though at the time of my first appointment so I wasn’t blindsided at the post-op appointment.

Hold on in there and just remember, they are building up a picture, not all the information is available at the moment but they are trying to get it as quickly as possible. The medical staff don’t want you stuck in limo either - call the nurse specialists and let them know how you are feeling and hopefully they can support you whilst you’re waiting for those results. I really hope they come soon for you.

Big hugs


Hi guys

I know im a bit late to this but wondering how you all got on?

I have my clearance on tuesday and am beginning to regret it. My mind is working overtime and not sure how ill get through next 2 wks


@Gigifaz sorry to hear you are in the panic stage, I’m still in it 5 months later the waiting does not get any easier. The axillary clearance was quite brutal and its taken me a while to get full movement and I still have slight pain in arm and shoulder but hey ho just have to live with it.

I had 6 nodes removed 1 was positive so overall I had 2 out of 9 positive. Protocol was chemo then radio. I have refused chemo. My reason on this is the NHS predict that they make you use (I found that a very bullying technique and went for 2nd opinion albeit the same results but delivered in a much nicer more consultative way). On the predict it only made a difference to 7%. I also thought well you’ve already taken the axillary which is a line of defence do I really want my whole body flooded with a chemo which can destroy good cells as well as bad. I’m doing so many alternatives from diet (and it’s an extreme diet), CBD, light therapies, salt baths, grounding, yoga, tonnes of supplements to numerous other things just didn’t want to poison myself with that treatment. I have against my better judgment started Tamoxifen but will see how long that lasts. I went down that road as I wasn’t doing chemo and quite frankly you just feel so scared about what is the right thing to do. I will do radio but that didn’t go well on the CT plan and they said my breathing wasn’t right, and as it was left breast all I’ve read is that you need to do the deep breath hold, so now I’m panicking about that, and am unsure if I’ll even go ahead with that now as you just get paranoid that that could lead to other things like lung damage/cancer.

I’ve read and researched almost to much as it can be conflicting as what you should and shouldn’t do I’ve even given up tea and coffee in place of baking soda, lemon and water to keep my body alkaline.

It’s a minefield, you just have to go with what feels right for you. From the medical profession it is just protocol and not down to the individual. 

Whatever the results, you have time on your side to think about it, just remember everything is protocol and it doesn’t mean you have to do it. 

Sending big hugs ? let me know how you get on and here if you have any questions or worries

Hi @Cazy214 

Thanks for coming back.

I had the clearance yesterday and so far not pleasant, already having to go into clinic as the stupid bottle is leaking and on top of that my period came 3 days early so im positively grumpy today.

I have been advised chemo also although i have now demanded an onco test at the instruction of my second opinion consultant.

What an absolute shit show cancer is. Im almost proud i got the op as had so many reservations now thinking why didnt you stick with your gut.

Quite frankly hoping they take the drain out in clinic as ive only drained 30 ml since yesterday, i have no idea if thats a lot but it doesnt seem.

Heres to holding out for better days!


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Hi Gigi! Don’t second guess yourself. It’s over and you followed protocol. You’ll heal. Focus on doing everything possible to enable that healing. And for removing drains at least here they like to see 3 days in a row of 30ml or less.

And good for you for demanding that onco test. It’s standard treatment now and everyone with a ton of lymph node involvement who has a hormone positive tumor should get one. 

Thanks kaye? the nurse said i can have the drain out on friday as im not having much action.

I think feeling a little bit hormonal hahaha

Probably. You had a big surgery. Recovery is going to take time and wreaks havoc on you in the meantime.


Sorry, Cazy124, that my reply is too late to have been of any help to you. (I hope you are getting through this initial recovery phase okay. It is still early days.) But sharing stories is always useful, even in hindsight, and may help others new to this thread if it is relevant to them.
(LauraR: I so identified with your conviction of spread, and the dread of each new scan’s results appointment, and the “how much worse is this going to get?”. And then to discover, after you’d just gone through the surgery, that there was to be another op, such gut-wrenching news … again.)

I was postmenopausal at 62. Following a double mastectomy - two breasts, two different cancers - with only 1 node positive in the end (out of a ‘suspiciously few’ 9 reported on). It wasn’t one of the sentinel ones, so deep gratitude to my surgeon who spotted it during the mastectomy surgery), but without being able to know at that stage that it was the only one, I opted for the more radical route of axillary clearance (on that ‘involved’ side) as being a more tangible look at the situation, rather than blindly zapping my armpit with radiotherapy … which I did have on the remaining chest of that side, as adjuvant treatment for the ‘worst of my two cancers’ - invasive lobular.

I am sorry to have to report though, that as a result of clearing out most (or all? who knows? not me) of the nodes on that side, I then went on to develop lymphoedema in that hand/arm for my trouble … unusually fast within 6 weeks! Even though I now have this lifelong condition to manage which can be pretty frustrating at times, and may get worse in time, I still believe that, on balance, it was the right decision. Otherwise, I would still be fretting (if I’d opted for armpit radiation) that it may have left a rogue, resilient positive node or two behind.

(In response to a post in a different thread) I’m afraid I have no idea to what I should attribute the lasting numbness around my armpits and ‘bingo wing’ areas - the initial mastectomy surgery, or the axillary clearance surgery with bonus ‘dog ears’ tidying up - since one followed hot on the heels of the other. There has been no satisfactory aftercare in the way of a thorough follow-up review, examination or discussion with a consultant (13 months on), just one cursory telephone check-in with a nurse. A second call has been postponed 3 times - now scheduled for 16 months post-surgery. The team who dealt with my case have now all left the hospital and it is down to one consultant surgeon, one consultant oncologist and ‘specialist doctors’ from a consultancy/agency.

I am now pushing my way through the necessary hoops to investigate concerning symptoms. I fluctuate between being convinced that the sneaky, very-hard-to-detect-on-anything-other-than-MRI invasive lobular breast cancer has managed to metastasize to a very tender/painful rib and beyond, with other niggling symptoms, to then thinking “surely it’s too soon for any development yet?!”

The cancer ‘journey’ (sorry) is a series of leap-of-faith, yet life or death, choices and it is the most awful of situations to be in. The only consolation is that we (on this forum) have all been there too. It seems that the latest protocol is to invite (put the onus on) patients to roll their own dice when all we want are some guarantees.

I had my axillary clearance on the 06/0723 after the sen tile node was positive after lumpectomy on the 31/03/23.
I had a wonderful surgeon who drew me a picture of what he planned to do in my armpit, he said it was the first time he had been asked!
He removed 14 more nodes and thankfully rang me as results came in otherwise it would have been a 3 week wait due to strike action. Luckily they were all clear although recovery from op was horrible plus a pulled the drain out day before removal, incredible painful.
Due to pressure my scar at the bottom around an inch burst open and to say it leaked like a tap is putting it nicely, 6 weeks to heal numerous trips back and forth for dressing. Lack of sleep etc. Lumpectomy healing was a doddle compared to this.
Healing has been long, frustrated with lack of arm movement but 11 weeks on I am about there and have begun using dumbbells. Ok by physio.
I’ve been on Letrozole 5 weeks foggy head and no emotions can’t get excited about anything, fed up. Phased return to work just feel like I am going the the motions.
Initial appointment next week to start radiotherapy. Oncologist told me I had a 2% benefit from chemo I declined, and my onco type testing came back as 6 so I was told a 10% risk of return.
I know been extremely lucky and I am incredibly grateful but it always lurking in the back of my mind the what ifs.
Hope you coping after op x

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