New DCIS diagnosis

[Lovetorow]

I was diagnosed with DCIS two wks ago. About a few months ago I had itching on the skin of my left breast. Later a mass showed up, about 1.5 cm. The diagnostic mammo and ultrasound did not show any cancer. The mammo was a birads 1. The radiologist came and talked to me after the ultrasound and said he didn’t see any cancer. My mass showed fibrosis tissue that wasn’t typical fibrosis tissue but no cancer. A month ago I had spontaneous white sticky nipple discharge from one duct on the left that lasted less than a day. I was told this wasn’t worrisome for cancer because it wasn’t bloody or clear but had a biopsy anyway. Biopsy found DCIS 1mm K1-67: 5%. Hormone negative. HER2 positive.

I haven’t met with the surgeon yet. Oncologist referred me there for either lumpectomy with radiation or mastectomy with no radiation. I live in a small rural community and the surgeon I have an appointment with doesn’t do surgeries in conjunction with plastic surgeon for reconstruction. I am 99% sure I don’t want radiation so I am leaning toward mastectomy.

If I don’t do radiation, wouldn’t it be better to just do the reconstruction at the time of mastectomy?

I feel I should have a double mastectomy because this cancer was not found on the diagnostics. It scares me that something may be in the right breast that isn’t seen. I read that people with hormone neg, HERS + are at higher risk of 2nd breast cancer unrelated to first.

But I also feel a double mastectomy is such an extreme decision being it’s a tiny lesions caught early. What are others thoughts?

In regards to reconstruction, I am 60 and as I age, surgical risk is high as women get older for replacement of implants. They say they need to be changed every 10’years. I am otherwise totally healthy and expect to live a long time more. What happens to women after they are 80 and no longer a surgical candidate if the implant rupture?

what are people’s thoughts about the flap reconstruction? I have small breasts and not looking to increase my size. Just want a little something there.

[Happyrosie]

In the UK where I live each diagnosis of breast cancer goes to a multi-disciplinary team consisting of the consultants in various disciplines and a breast cancer nurse. The team, based on the evidence in front of them, recommend the next steps (radio/mastectomy/whatever). Just because one lives in a rural area makes no difference. This may in fact be what happens in your part of the world (obviously they do not meet physically).

Personally I opted for a mastectomy rather than lumpectomy and this was the right thing, as the tumour was far bigger than originally thought. I have a prosthesis, with which I am comfortable.

You need to discuss your thought with the appropriate person on your medical team. Here, the best person would be the breast cancer nurse who has seen it all before. Failing that, there are several breast cancer charities who help to advise.

I hope you can find the resource to help you decide.

[Lovetorow in reply to Happyrosie]

Thank you for your advice. I requested a referral to a town my wife and I have family in, it’s a university hospital and medical center group with a breast cancer center 🤞 my referral is accepted.

[mathematics]

I've had a lumpectomy with radiation but had to have Chemotherapy TAC , which meant the re devil, 6 doses and lymph nodes removed as well as ten years of hormone tablets. My lumpectomy was really neat so I had no need for myself to go for reconstruction. I wear padded sports bras . I was 47 years old when diagnosed and I am now 60. They should keep a good eye on you every six months then one year Regular check ups. You have to do what your happy with. I had to have a lumpectomy then another clearance operation as they found DCIS in my margins. The cancer I had was Grade 3 and the tumor was an inch and in my lymph nodes. I hope you get peace of mind i personally opted for the less invasive options . I now go every three years for a mammogram and have a phone number to ring if a problem occurs. I live in the UK. Take care. They told me on my last appointment that they had done everything to stop the cancer returning.

[Lovetorow in reply to mathematics]

Thank you for sharing your story. It is comforting to have this connection to those who have journeyed before me.

[smithtennyson]

I had a lumpectomy with radiation. It was the best thing I have ever done. The oncologist wouldn't do a mastectomy as she said it was too drastic. I just have a small prosthetic in my bra to even them up,. They would not do reconstruction at the same time as the cancer operation in our hospital, they called me back 6 months later to see if I wanted it. Why won't you have radiation though, it was so simple and not as drastic as chemotherapy?

[Lovetorow in reply to smithtennyson]

My cancer was not seen on the diagnostic mammo or ultrasound so how does one know there isn’t more that isn’t seen? For this reason I feel nervous to just do a lumpectomy. Radiation scares me. I know many people have radiation but I feel I would rather have the mastectomy with reconstruction and be done with it.

As I am sure everyone who is diagnosed with cancer, I have such fear.

[DCCC_204 in reply to Lovetorow]

hi Lovetorow, I had cancer discovered in Early 2022. I had Er& Pr positive Her2 negative lump was 1.8cm level 1. My surgeon recommended a lumpectomy even though I had scarring on this breast but in a different area. These scars were from surgeries I’d had done to remove lumps that fortunately were benign 30 years earlier. I went with her recommendation. This was followed by 4 chemo & radiation & letrizole since late 2022.

I have been having pains especially in the nipple area more recently. I’ve seen my GP & she’s having me scheduled for an urgent mammogram. No lumps have been found but like you, sometimes the lump or mass comes after. I hope it’s lymphedema. My arm has been swelling a bit lately.

Looking back now I’m thinking maybe I should have had a mastectomy. Maybe I wouldn’t be experiencing this pain & worry now. But realizing a mastectomy would be a much more significant surgery & recovery I choose to go with the surgeons advice.

Here’s hoping that you can determine the right decision for you. Best of luck.

[smithtennyson]

My cancer was not see on the mammogram, and I had to have a biopsy, which they hoped was in the right position, which it wasn't. I ended up going to Kettering General where they have a new fangled scanner where they put a dye in your arm, and can see on the screen where it is. Definitely state of the art, in comparison to Milton Keynes, my local hospital. If you are in the UK, they call radiotherapy a 5 minute burst for 5 days running. That was getting you settled and positioned properly and by the time I had finished my polo, it was over. I never felt anything until the last day when it got a bit warm, but it really was a doddle. I then used H2K cucumber body lotion on it, which calmed it down. That was designed by a family of girls in Harrogate, who had breast cancer, and its totally natural. Don't worry at all about that, if you are in the UK, I had to go to Oxford for mine, and they were brilliant, as like you I really panicked over it, and initially was in tears. They made me feel so comfortable, and after it was all over, felt a complete baby for being frightened of it, when other go through so much more, as chemotherapy is a lot worse. Your breast cancer nurse should be able to help you with any problems and assure you what is the best to do, as I initially said 'Just take it all off', like you I was dubious of where it was, and the size. xx

[Lovetorow in reply to smithtennyson]

Thanks for sharing your story. Thought provoking.

[smithtennyson]

xx

[RazB]

Hi, I’m coming in late on this conversation as have just joined this support group. I wonder how you are and what decisions you made? Im in the UK, had the same diagnosis as you last May, and had lumpectomy and radiation. My lump was not seen on mammo but I could clearly feel it. I was given an ultrasound and a metal clip was placed where the doc thought the lump was. Then 2 days before operation I had radioactive dye injection into the lump so it was clearly seen during op. I ended up having a 2nd op as DCIS was found and not all taken out in first op. Radiation was quick and easy (1 week daily then a 2nd week daily which was called a “boost”). I felt almost immediately pretty sick and very tired but it passed after a few weeks. My sister had the same diagnosis as me/you 6 years ago and was offered a mastectomy & no treatment. I asked for the same in May but my surgeon was very clear that it was not needed. I went with her suggestion and I’m glad I did. She didn’t put me under any pressure and gave me a week to think about which I’d prefer. I hope that which ever route you have gone down you are now through the worst of it and feel supported by your medical team. Love to you and let us know how you are doing xx