Hi All,
I had 10mm grade 1 invasive tubular + low grade DCIS, ER+ picked up on Mammogram last year at 51 (had lumpectomy, node removal, radiotherapy)
It really is a rollercoaster of emotions… but it will get better.
I yo-yo’ed from feeling very lucky to resentful that I had to stop HRT and take Tamoxifen, and overwhelmed at all the treatment I had to have, especially as I felt absolutely fine - it really does mess with your head - it feels like you are ‘pretending’ to have something, which makes the treatment seem so surreal.
I felt very resilient throughout all the treatment, but then really struggled when it was all done, everyone kept saying how good I must feel now it was all over - felt like shouting ‘it’s not over!’ as just felt so awful with menopause symptoms and tamoxifen side effects (ive really struggled with accepting i’ve got to be on this for 5 years)
Had a meltdown on the phone to BCN who reassured me - I almost had to hear someone tell me that I had been through something pretty big, as I had been minimising it so much.
I’m 6 months after surgery now and things have really improved. I think I’ve got used to tamoxifen and learning to cope with Menopause as best I can. Armpit and breast still ache, but need to accept some things you just have to live with.
Give yourself time, it will all pass and life will hopefully get back to normal.
"you have 3 choices in life: give up, give in, or give it all you’ve got " xx
@polly6
“Pre cancer” was also a term I’ve come across. I had an IDC which is invasive cancer. I also had an area of DCIS which was explained as “pre cancer” by one of the nurses. The surgeon however, made it clear that it was the earliest form of cancer that had not become invasive, which is the key difference. Because DCIS is not invasive, or “self contained” it is unlikely to have spread…but it might in the future. Hence it is given a “stage” and requires treatment.
What adds to confusion is Cancer Research UK and many other reliable sites say it is cancer, yet MacMillan (and incidentally it was a MacMillan nurse) says it’s not.
My cancer was Grade 1 but very small (10 mm or less) and of a very slow growing kind that rarely spreads . It was so low grade in fact that I got onto a medical trial and was randomised to have it removed under radiological guidance and only local anaesthetic so that made it seem almost as though it wasn’t cancer - no operation no GA no lymph nodes biopsy . The Surgeon made light of it as well but then it seemed I still needed tablets and radiotherapy . I remember feeling quite confused and asking him why as it was so slow growing and such a tiny risk of spread I needed to have anything done and not just be put on active surveillance which is the case with a friend who has prostate cancer and is on no treatment at all - just regular tests . He admitted that he couldn’t really explain the difference . However my trial procedure wasn’t successful which then meant I needed lumpectomy and SNB after all - should have just done that in the first place I think as it just all added to the stress .
When on the one hand you’re being told that it isn’t at all serious yet on the other you need surgery and treatments that aren’t risk free in themselve it sounds completely inconsistent and utterly mad . There’s no wonder that we struggle to get our heads around it . Xx
Hi I just wanted to let you know, I went through exactly the same 2 years ago, mamogramm at 59yrs found the DCIS majority of my breast was covered with it, I wasnt in a good place at all, it took me 3 attempts at surgery, due to high anxiety and high BP, had first op margins not clear, then second op. Then radiotherapy. I happy to tell you I had my 2 year review in February and DCIS hasn’t retured and everythig came back clear, like you hospital did say Im a breast screenjng duccess story. I feel very lucky. At times during thr diagnosis I felt everything was out if my control and had to attend councilling session to go ahead with the op but got therr in the end. You can do this!
Your story was exactly me 6 years ago. I too was terrified of the hormone blockers and I refused to take them. Low and behold, 6 years to the month later a mammogram found a stage 1, grade 1, lump the size of a skittle in the opposite breast. I am now going through the same treatment process all over again. I have been told the “lucky” statement as well. This time around I’m gonna give the blockers a good hard try and see what happens. Hopefully I can tolerate it. I was also told I could have taken them 6 years ago and still ended up with cancer in the other breast. I don’t know what to think about that. Most days I kick myself for not taking them the first time. I can’t tell you if you should or shouldn’t take them but I just want you to know you’re not alone and I have all the same feelings you do. Good luck and stay well.
I’m so sorry you had to go through this twice! I spoke to my PCP, and she explained it differently than the oncologist. She said, “they make a substantial reduction in the chances of getting cancer again”. So we can still get breast cancer, but it’s not as likely. Her use of the word “substantial” is really what did it for me as far as changing my mind and at least giving them a chance. I’m almost done radiation, and meet with the oncologist on 3/25, so I’ll start sometime after that.
Looks like we are basically on the same time line as well. I start radiation 3/17 hopefully for just one week and then start the hormone blockers 2 weeks later. I’ll see the Oncologist again 4/30. Wishing us both success in kicking cancer and good health going forward!
Hi I’m having mastectomy with reconstruction in April for dcis. Pretty much everywhere in my left boob. I’ve had all the feels too and my breast care nurse has been amazing. She and my oncologist gave me the words to use with family and friends - they told me to say I have early cancer which needs treating. That really helped me. Ive really struggled with concept of feeling lucky. I feel lucky they caught it and lucky to be able to have it treated. I don’t feel lucky to have it. And comparison isn’t helpful.my nurse was really clear this is a trauma and a big ‘life thing’ . The mental journey is as big as the physical I think for me. Dont feel alone - there are lots of us out here. Probably having random cries in supermarket car parks, feeling anxious and very emotional. And that’s ok because it is a big thing. X
I love this., It made me laugh and resonated so closely, at what is a tough time for me emotionally right now. Thank you sooooo much for sharing. It is absolutely like that!
First time poster and so relate with you. Family history mammogram found DCIS March 24, lumpectomy in April. I was told “pre cancer” “it’s only small” “operation then you can get on with life”. My operation day was long, my follow ups were delayed so started tamoxifen as oncologists wanted genetic testing ( why did the first dr not offer this?), then eventually I had 5 days of radiotherapy. Normally I just get on, but I feel so in limbo. I am 48, no idea about menopause due to coil but have turned really moody, can cry so easily and my legs feel like lead ( hate this as I love to run) and sleep is over rated. You are definitely not alone.