Hello Everyone
I had my first mammogram in September and the result was DCIS intermediate and high grade.
I had a lumpectomy on 22nd November and the margin came back too narrow. I am a young 52 and feeling very on my own. When I saw the surgeon he said they could try taking a little more and I would need radiotherapy or I could have a mastectomy. They also now have to check my lymph nodes. I am so afraid of making the wrong choice here and I don’t think I can cope with another result that doesn’t go my way. I am also terrified of lymphodema. Has anyone been in my situation? How do I cope here?
Please don’t judge me - I am just so frightened.
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Hi lovely,
Firstly I am sending you a big big big virtual hug and masses of love.
I think you are so brave for speaking about how you are feeling 
I was diagnosed with stage 2, grade 3 triple negative breast cancer and found out I had the BRCA 2 gene mutation in November 2023. I was advised a double mastectomy was my best option. I had the double mastectomy in June this year after chemo and immunotherapy. I decided to stay flat rather than have reconstruction and have no regrets about my decision. I also had 6 lymph nodes removed, 15 round of radiotherapy after my mastectomy and like yourself I had major fears of lymphedema. I found speaking to a lymphedema nurse helped ease my anxiety and I had a few counselling sessions before I made my decision of if to stay flat or have implants.
Please speak with your breast cancer team and ask as many questions as you can to help you make the best decision for you. A member of you team should also be able to put you forward for some counselling if you want it.
please take care and be kind to yourself.
I hope all goes well for you and will be keeping you in my thoughts
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I was 52 in July when I was diagnosed with a 32mm invasive, and they also spotted some calcifications, and then spotted some on the other side and then they turned out to be DCIS so had a double mastectomy after which they also found two tiny invasives on the non-big lump side!
Three lymph nodes on one side and one on the other were clear - yay, my first bit of good news, and I didn’t need chemo.
I decided to stay flat and absolutely love it and no regrets.
BUT during those early days I was a mess and in total shock (GP gave me diazepam and sleeping tablets), as diagnosis kept getting worse. I couldn’t imagine ever smiling again or getting back to some resemblance of a normal life.
Four months on and that’s exactly what I’m doing, I am on letrozole for 10 years but managing well, have lost two stones since diagnosis and am the fittest and healthiest I have ever been.
You will get through this - you will be happy again and you will be on here in the future reassuring future women that they will be fine too (my old messages were asking for help, similar to you, because I couldn’t get through a minute without panicking).
Use your GP for support (mine had a counsellor too) and sending lots of love xx
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Welcome to the forum @cinders52 . Did you get allocated a breast care nurse -if you did you could maybe ring them to talk this through - don’t feel rushed into a decision . You could also ring the BCN nurses helpline they are very good to talk to.
It’s understandable you don’t want another op where things don’t go as you’d hoped . There are people on the forum who’ve been in similar situations and have had more than one re-excision . I think it’s a very personal choice which option you go for . I hope you come to a decision you feel comfortable with .Best wishes Jill .
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Breast Cancer Now Nurses helpline
0808 800 6000
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Hi cinders52
I haven’t been in your position so can’t offer anything useful there, but my heart went out to you following your last comment and I just wanted to say you will never be judged here. It’s a frightening time and big decisions have to be made. No wonder you are feeling as you are and it’s great you have reached out, that’s huge in itself. This is a space where you can talk freely about how you are feeling and people will do their best to support, understand and never judge.
Sending love and hugs. x
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Hi cinders52,
Back in 2021 i opted for a lumpectomy, margins didnt come back clear, so had further lumpectomy for clear results. Followed by rads. No lumphadema.
I hear and feel your anxiety of trying to make the right decision, only you can answer that when presented with the facts. I wish you well and sending a big gentle hug to you
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No-one on here is going to judge you at all. Being frightened comes with the territory I’m afraid, but that is what is so wonderful about this forum. We have all had different experiences but they are all based around breast cancer & tyhere is always someone out there to listen & help.
I had 39 lymph nodes removed when I had my mastectomy 2 years ago. Like you, I was petrified of lymphedema but it does get easier. I still do the stretches from the sheet given after the op which I find help. So far so good but talking on here or to the BCN nurses - they are brilliant, kind, helpful & every other good word you can think of.
Good luck with your journey & big hugs 
Hi cinders52
Just adding to the stats:
With already strong family history, I was indeed diagnosed in 2022 with a different cancer in each breast (mucinous and invasive lobular), diagnosed during the same raft of tests (thanks to my diligent and persistent surgeon), after my initial self detection (small lump, but pure instinct told me this time it wasn’t just a cyst). Opted for double mastectomy (I’d already considered this in the past as a preventative measure - oh how I wish I’d gone ahead then!), followed by axillary clearance after one node was found to be involved with extra capsular spread. My attitude was “cut away everything threatening or potentially harmful down the track NOW”. I hope to have saved myself any further messing around later. Stayed flat with no regrets on that score. Perfectly comfortable presenting this way, although for the odd occasion if I want to ‘fill a frock’, I will strap on one pair or the other of my 2 sizes of silicone prostheses for a few hours, which are totally convincing. I was unfortunate to be one of those 10% - 20% who did develop lymphoedema in the hand/arm of the clearance side but after various therapies, methods of attack (including an expensive massage machine to use at home), I kicked it into touch with just the tiniest bit of puffiness at the base of fingers.
Hope this helps in your quest to gather people’s thoughts and experiences. Good luck
Hiiiii.
I opted for lumpectomy & radiotherapy to follow after being diagnosed in May with breast cancer. No one could have predicted the path at all. 1st surgery should have been enough. It spreads…2nd surgery brought all lymph nodes out & upper arm nerve & further shave on concerned breast area. My surgeon & I agreed there was a good chance to shave & go for 2nd surgery. I was 53. On my own, but knew I couldn’t be rash & remove the breast until the surgeon said it needed to come off. I thought, I wouldnt take my leg off if I had a rotting foot, this was my crazy rationale. Trying to save me. I panicked over getting lymphodeama, read all sorts on forums. Then thought. I was using energy stressing over an if or a maybe.
We were all confident it would clear.
It didnt, it spread more.
3rd surgery was full mastectomy & diep flap reconstruction.
Having had pain that I couldnt describe, frozen shoulder, lack of shoulder flexibility after 2nd surgeey, I still have no signs of lymphodeama… so far so good.
I would still choose my same options if faced with the same. I wanted to save it if safe to do so even though I am now sat here with a Holly Hobbie patchwork body & a tellytubby hill for a new boob.
Hope you are ok.
Remember …those decisions are yours & not families, friemds etc, just yours xx
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Hi there,
It is such a tough time and you are doing so well to come on and ask the community about their experiences… it’s good to have as much information as possible before committing one way or another. It’s good to know that you’re not alone and that other people have been facing equally, if not more difficult, decisions.
For some of us, more than others, it is so hard to make such decisions. Especially when there is the added fear of disappointing our friends and family - feeling that they might have a different idea about what the right thing to do is.
You honestly just have to listen to yourself and weigh it all up. Make the decision that feels right at the time. That is the only right decision. We can worry ourselves with ‘what if’s, and so on and so forth, but you are being presented with options and these are viable options. Doctors can strongly advise, and there are still choices to be made.
I am 47 and had a lumpectomy and SLNB in July 2023 with clear margins and then in December I found a new lump at the site of the original lump… With delays in decision making about chemotherapy, the radiotherapy was due to happen after Christmas - as a result of not having had radiotherapy, when the new lump was confirmed to be cancerous, I was given the option of a further lumpectomy and SLNB followed by radiotherapy, which went ahead in February and July respectively. Had I completed the radiotherapy the first time round, my only option would have been to have had a mastectomy (which I really wasn’t feeling mentally prepared for at the time)
It is so scary how quickly the second lump formed - if you read about growth rates online it wouldn’t seem plausible… but that’s what happened.
Since the beginning of this year I have lost a tenth of my body weight - and there is no explanation. I recently had a series of blood tests done to investigate this and the ongoing tiredness I’ve been feeling, but everything came back within normal ranges… I don’t feel like I’ve been actively stressing about things, but maybe that is the case…
Anyhow fingers crossed that things will level out and that I am cancer free. I guess it is inevitable that thoughts will be there at the back of your mind, regardless of how positive you are trying to be.
So do try to stay positive, and believe that you are making the right choices at the right time. These are your choices to make, regardless of pressures you feel from medical staff, family and friends and well wishers.
Give yourself time - take time out to focus on you.
Getting well and moving forward are the only important things right now. Then you will have energy to give back to loved ones.
Best of luck with it all xxx Mir
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I was diagnosed with high grade DCIS with a 8cm spread and was told a mastectomy was my only treatment option. I had lots of other health issues which meant I had to wait 4 months for the op and then another 3 weeks for the results. Luckily the SLN and all surrounding area were clear and I have no further treatment other than an annual mammogram on my ither breast. The mastectomyI was easier to cooe with than I imagined. I had 2 large seromas after the op which were aspirated but nearly a year on have not had any lymphodema. I did the recommended exercises and got back to yoga as soon as I could which has really helped me. My life is now pretty much back to how it was pre diagnosis. Only you can decide what is best and every case is different, it must be so difficult. Sending my very best wishes
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Hi i was also diagnosed with DCIS in September. Had operation in October then got told the margins weren’t big enough. Had a second operation in November. Got given the all clear yesterday, i still have to have radiotherapy in January as a precaution. My mind set for my decision was to try these operations first, if they didn’t work then i still had the choice to have a mastectomy. I felt i was taking control of what happened next and all i can say is stay strong and fight it! I hope everything works out for you and remember to take time out for you. X
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My friend had 3 lumpectomys before it was decided she would have a double mastectomy. It’s such a stressful time. I guess you can only talk through all your options with your team until you feel informed enough to make a decision. Good luck xx