Lumpectomy and nipple loss

Hi everyone - like all of you I have had a surprising breast cancer diagnosis, with planned lumpectomy hopefully in a couple of weeks. I’m 68 now and never thought I was particularly at risk. I’m desperate to get this sorted but I know I’ll lose the nipple in the process which plays on my mind. Obviously not half as drastic as other procedures I know. It’s oestrogen receptive so I find myself worrying ahead to possible side effects of hormone therapy too. I never realised what a rollercoaster of emotions breast cancer brings with it but am trying to be practical about it. I do feel for you all - definitely one of those things you have to go through to properly understand. Sending love.

6 Likes

Hi @anne3, welcome to the forum. I’m very sorry to hear about your breast cancer diagnosis and please know that we’re here for you.

Please don’t hesitate to reach out if you can’t find a particular topic.

I hope you find the forum a very helpful and supportive place and feel able to reach out and connect with others here. It really is a lovely community.

Best wishes,
Kev

3 Likes

Hi @anne3 there’s quite a few of us who are in our 60s and 70s on the forum so welcome even if it’s the last place you want to be. I was 66 at diagnosis and am 68 now and also had Er+ Pr+ (and HER2-) histology.

You’ll feel so much better when the tumour is out even though it is a traumatic thing to go through particularly when you look a bit different afterwards. I hope that you have plenty of support from family and friends and, of course, you have us. The main thing following surgery is to recover well, do the exercises that they give you and try not to rush back to things too quickly. It sounds as if you’ve already been told what your treatment plan might be, although it won’t be confirmed until excision and analysis, but presumably radiotherapy and endocrine therapy is on the cards. I didn’t have to have chemo and I had the 5 day rads, which I was happy to have and which caused me no problems (as yet anyway, 15 months on from radiotherapy). If you are undecided about any of the options they give you, make sure you ask them to explain the benefits to you in real terms as the one-size-fits-all program of surgery/rads/AI can seem a little pat. Ask them to do the Predict test with you.

As for the AI, I have been very up and down about it but, with a couple of rest periods, have continued to take it. I was prescribed Letrozole and have had a few creaky joints but nothing I haven’t been able to work through. There was a bit of vaginal dryness but Hyalofemme has sorted that and brain fog, which comes and goes. Taking the endocrine treatment is a very emotive subject for us post-menopausal women as any search of the forum would show. I seesaw between the two extremes - that of doing all one can to ward off recurrence, particularly metastatic recurrence and that of saying, at my time of life I want quality rather than quantity of life. I would never advocate taking it to those who do not want to nor not taking it to those who do but I would say that the logical thing is to try it and see as very many women get no appreciable side effects at all.

Statistically speaking, most of us will go on to live recurrence-free lives but it can be a tough road, physically and emotionally, to get there. Good luck with everything.

2 Likes

Hi Tigress! Thank you so much for that. It’s good to know other people do understand how it feels (not so good for you though!) I think it’s partly when you’ve been through the menopause you don’t want to mess with your hormones again, getting older all the time! In my head I can deal with it rationally but then emotions take over :face_with_diagonal_mouth:. I will do all it takes to cope with it and yes family are great. Don’t feel really like divulging all to everyone though. Yes I have a provisional surgery date with probs hormone therapy, possibly radiotherapy but as you say it all depends on next results after the op. Am glad you seem to be well and have coped so well. Long may it continue! :+1:

1 Like

Hi @anne3

Sorry to hear of your diagnosis, nobody knows when it will happen to them.

I was 54 and had had menopausal symptoms since mid 40s, been on HRT for 5 years which helped with many symptoms, but the lump in my right breast meant I had to go cold turkey. You can imagine all the symptoms returned with bells on.

I was diagnosed with bilateral (Both) invasive carcinoma grade 2 ER+ HER2+ and grade 1 ER+. Not so common two primary cancers in each boob. I’ve had a lumpectomy with clear lymph nodes, chemo with Herceptin ( which continues until September) Letrozole (fatigue, aches, poor sleep, swollen ankles) but it suppresses the Oestrogen reducing risk of recurrence and will have Zometa (Zoledronic acid) infusions for my bones. My lumpectomy scars from the front are not visible as my tumours were nearer to the side and back, no nipple involvement, but I can understand loosing your nipple can be very hard. I’ve seen people having nipple tattoos which look so realistic, so that’s a positive. I’m only 7 weeks into Letrozole and been told to hang in for minimum of three months maybe up to six in the hope that side effects will lessen, so fingers crossed.

This forum is so kind and helpful, you will find lots of support. Breast Cancer Now also have a helpline open 9-4 Mon to Fri or 9-1 Sat 0808 800 6000. It might be worth a call to one of the nurses to talk through your procedure and worries.

Take care :smiling_face_with_three_hearts:

1 Like

hi @naughty_boob (! great name). - thank you - sounds like you’ve been having a rough time. I actually feel quite well but obviously I’m not…. I do hope your side effects lessen as it must affect your life so much. It does help to have people on here helping you along and not judging! Look forward to hearing you’re feeling much better soon. Look after yourself x

2 Likes

Hi @anne3

I do feel stronger every day post chemotherapy and radiotherapy but there are some side effects from them or Letrozole ( who knows) that can get you down. But hey the cancer is gone. Breast care nurse said it was early days still and not to be so hard on myself.
I suppose hearing others moving on sometimes makes you feel that you are some how not strong enough or a bit of a wimp, but then I need to check myself and say everyone is different, everyone does what is right for them.

Let us know how you get on. :smiling_face_with_three_hearts:

I’ve learned already I think that everyone’s experience can be so different. So it’ll be easy to think others are doing better but not necessarily the case. I feel well at the mo so it’s a shame to think that could change, but better to start off at your best and get rid of this nasty intruder. (Thinking of doing some art therapy on myself and scrubbing it out - I have a memory of the ultrasound image of it :rage:). Good luck! :smiling_face_with_three_hearts:

1 Like

Dear Anne, welcome to the forum, I feel you have had some excellent advise from our lovely ladies, one other thing I would like to add is a notepad nearby is always good to have, as we can be all over the place with so much to take in, just scribble down what is on your mind.

Wishing you lots of love and luck going forward, keep posting letting us know how you are getting on.

Hugs Tili :pray::rainbow::pray:

1 Like

Hi @Tili and thank you. Yes good idea, I’ve written a couple of things down I’ll need to ask about but yes my head is all over the place! I know what people mean when they say they just can’t believe they have breast cancer, it’s hard to even write it and it seems like a bad dream. Trying to stay calm …. at least I know there are lots of you lovely people out there! Take care x

3 Likes

Hello, it’s surreal isn’t it? I couldn’t believe it for a while and then the rollercoaster kicks in and you whirl through investigations, operations and treatments. I sailed through my ops, a lumpectomy then a mastectomy and never felt ill or had pain. Then 5 x radiotherapy (which caused soreness and fatigue). I was really surprised at how easy it was, for me personally, to accept the absence of my left boob. I am hoping you might feel the same about your nipple. Nobody else will ever know unless you want them to.

I took HRT for 10 years to treat very severe menopause symptoms, I also had to go cold turkey. The letrozole has been the worst thing for me and I do now feel more than “a bit of a wimp.” I just cannot get back to being myself with all the debilitating symptoms returned and living with the constant aching, tiredness and lack of sleep. As you say, everyone is different and not everyone gets the side effects. I still take the tablets, for now as I am risk averse but it has been 7 months and the aching only gets worse. The flushes have become less severe but very oddly (unheard of I think) that happened as a reaction to the Zometa infusion (every cloud…)
I have signed up for the BCN moving on course in May as with these symptoms I am not able to move on and I am looking for some answers.
I wish you well with your surgery, it is a long road but there is lots of support available. xx

2 Likes

Oh gosh sounds like you’ve been through the mill a bit! I’m still at the can’t believe it stage, and hoping realistically or not that I won’t need too much in the way of further treatments, ops and therapies :crossed_fingers:t3:. Trying to take one step at a time but haven’t even had my op date properly confirmed yet. It’s so weird when I’m actually feeling and looking so well to know there’s something else going on inside. You’re right though 99.9% of people will never know about my nipple loss and actually I don’t mind that boob being a bit smaller! I do admire how you are coping with losing one altogether though, you obviously have inner strengths.
The moving on course sounds like a good idea, something positive to hopefully help you. Good luck!

2 Likes

Cheers! I totally understand the disbelief you are experiencing. I was the same. There was nothing wrong with me and I was not ill. Sadly, it is the treatment (and in my case, absence of HRT) that makes you ill!! I have been through the mill but we all have and many have had a much harder time than me. I am thankful for many things! With regard to acceptance of my missing boob, I genuinely thought I would be traumatised and horrified but it just didn’t happen. One step at a time is the trick, keep going and fingers crossed you will need minimal intervention to get you back on track. Good luck to you too xx

3 Likes

I can’t say anything about type, as I am triple negative, but I just had a double goldilocks mastectomy (aged 37!) with full node removal, and I no longer have nipples. I honestly dont mind! I never have to worry about getting cold again (!!!), and the 3D nipple tattoos you can get now are amazing. I have been through the mill with treatment, and continue to do so, but surgery was the easiest part for me. Good luck with your treatment, and remember that the breast cancer community is an amazing one,. You never ask to be a part of it, but they have you when you need it and no matter how you’re feeling :slight_smile:

2 Likes

You’re very inspiring - I would say brave too but I know you will say you had no option probably and clearly it’s much better to feel free of the nasty things and healthy. I’m so impressed by your positive attitude. Actually I no longer mind about the nipple, can only see it in the mirror anyway! Wishing you a trouble free and happy future! Take care x

1 Like

It is very strange when you are feeling very well, to be told that you have something wrong that you had no idea about! Last time I went into hospital I had something wrong with me and my op was going to make me feel better…this time, (last year at 68) I was going to go into hospital feeling well and come out feeling a lot worse!!! Hard to get your head round!
Yes, everyone’s so different - not only in our reaction and coping strategies, but also in our reaction to any drugs. I too worried ‘up-front’ about hormone therapy. I’d done one menopause after all!:scream:
The expected plan was surgery/radiotherapy/HT. I was so pre-occupied with the very outside chance of chemotherapy that I didn’t think much about whether I had any choice in any of the treatments! By the time I met the oncologist after surgery and before radiotherapy, I had determined I was to be allowed to be involved in the decisions about further treatment. I’d felt that hitherto, everything had been done to me without my having time to get my head round what was going on! Don’t get me wrong - I was supremely grateful!
I was lucky in that the oncologist said he was going to explain what was involved in the treatments ON OFFER and asked how I felt about it all. That’s when I said I wanted to be part of the decision making.
I told him I dreaded HT and he immediately explained my risks of recurrence, based on “the figures they put through their computer”! After radiotherapy (which has most benefit) had reduced my risk to 4% chance of recurrence, HT only reduced it a further 2% - it didn’t eliminate the risk altogether. Now there are lots of people on this forum who are so concerned about ANY risk that they cannot understand why someone would not do absolutely everything to reduce it even by tiny percentages. And I understand their decisions, and that fear - cancer really puts the wind up us all, and can play with our heads something rotten!!
But we all have different attitudes to risk too. I’m in farming and working with big, unpredictable animals and being around big machinery most of my life probably gives me a different attitude to risk, I don’t know. Farming is well documented as a dangerous job!
There are lots of people who have minimal side effects from HT but there are also some women who put up with debilitating ones. That is something I couldn’t do - I know I don’t have their fortitude to even deal with hot flushes all over again for such a small percentage gain! Besides, my job requires me to be out in all weathers - flushes and creaky joints wouldn’t help - when age is already making me slower!
If my risks had been greater, I WOULD have bitten the bullet and tried it. But at 2% chance I decided to not risk the myriad possible side effects on my quality of life. The oncologist didn’t demur - he listened to me, didn’t try to persuade me, and never even mentioned HT again.
We all have to assess our own risks and go with our best judgements at the time. Obviously I’ll be gutted if it ever comes back but I’ll not beat myself up over this decision because I’m enjoying my fitness and still working right now!
Listen to their advice but make sure you’re listened to as well - Good luck! x

2 Likes

Hi anne3 and all of the amazing people on here,
I too had a totally unexpected diagnosis of DCIS following routine mammogram biopsies ultrasound etc, then lumpectomy (showed invasive cancers), so my path was op, then Letrozole followed by 5 days of rads. I was 63 at the time of diagnosis in 2023.
I have Progressive Multiple Sclerosis and the HT did nothing but make my MS worse (my opinion). The Oncology team agreed with me (and tigress looking at the excellent comments on here), that Quality of Life is very important. The HT was only giving me an additional 2 1/2 to 3% protection of the cancer not returning so we all agreed that in my case, 5 years of feeling terrible on HT was not worth it…… I stopped taking it!!
I have completed the RT (nowhere near as tough as I had built it up to be in my head beforehand and the staff were outstanding!!), and on 7.3.24 I had my discharge appointment yesterday with annual mammograms and no further treatment …… I’m feeling on top of the world!!
The support from everyone on this forum has been awesome!! People who know exactly what we’re feeling, thinking and worrying about, providing reassurance and support at every stage is wonderful and I cannot thank you all enough!!
It’s been a tough few months and the advice you’ve given (moisturising during RT, exercising after lumpectomy etc) is brilliant!!
I wish everyone all the luck in the world on your pathways and again… thank you!!
YOU CAN DO THIS!!

3 Likes

Dear @tt59 what a positive post!!!. I’m so pleased that you have got the outcomes that suit you best. Absolutely, quality of life is the most important factor as we age, nothing will persuade me otherwise. Of course, for some, QoL includes the positive feeling that they are proactively reducing the chance of cancer recurrence by taking the pills, particularly if the risk is high or if SE are manageable. But that approach is not for everyone. The main thing is, for you the correct decision has been made and you now get to concentrate on having the best life possible with the full backing of your medical team. Fantastic news. I wish you everything you wish for yourself in the future and thank you again for bringing such positivity to the forum :rainbow:

3 Likes

Hi @tt59 - how brilliant, I’m so pleased for you. As you say we’re all different in our responses to treatments, our outlook on risk and quality of life etc. So good to hear people are doing well and coming out the other end of this. I feel on hold waiting for my op date but am going to have a little mini break on the coast this week, as I know that after the op I might not be up to it. It’s all the waiting! I admire you all for making the decision which feels right for you. Take care and enjoy your new freedom! x

2 Likes

Hi @Geeps that is good advice and it sounds like you made the right decision for your situation, risk etc. Quality of life and being able to continue your lifestyle does matter so much. I’m trying not to worry now about effects of treatments etc and firstly get over the op, get the results etc… trying to still do all the normal things too. Feel I’ve already gone through it all in my head! So pleased you’ve been able to make the right decisions for you…. you’re all so helpful and caring. Take care x

2 Likes