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Treatment plan post mastectomy for DCIS

Happygirl1981
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Hi all lovely ladies. I was diagnosed with 15mm low grade dcis and opted for double mastectomy due to family history ..maternal grandmother and great aunt had breast cancer. Post mastectomy it was upgraded to 18mm intermediate /high but no microinvasion. Surgeon believes no further treatment needed. Genetic testing only found an u certain variant so not really considered to have the main genes. Not sure why I still don't feel enough is done. Maybe I am overstressing..I asked the surgeon if I do needto go on Tamoxifen and he believes no. Not really sure what to do. Wanted to see if anyone has been in this situation?

  • Welcome to Cancer Chat, Happygirl1981.

    It's only normal to feel the way you do, given your family history and I think many here will be able to relate to what you're saying. Hopefully, some of them will be along shortly to chat with you and offer advice, until they do however feel free to jump in the conversations already going on here on the forum.

    Also, if you think it could help to talk with someone with a medical background, please know our lovely team of nurses is available Monday - Friday between 9a.m - 5p.m on this freephone 0808 800 4040.

    I hope this helps.

    Best wishes,

    Renata, Cancer Chat Moderator

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    Hi happy girl, I think if I had been told nothing further needed I'd  jump with joy. At my age over 65 but understandably doubts will come. Be confident & continue to self check for changes in lymph glands,axillary neck groin. If worried speak to GP. Enjoy life.pip

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    Sounds like you have had max poss treatment for this pre cancer - a bilateral mastectomy for that lev,e of family history and what sounds like is not Brca mutation is a lot of surgery, this is not recommended for the limited disease diagnosed so you have already gone over what is recommended. You should draw a line under it and enjoy life and don't give it another thought imo.  Hormone therapy will only make you feel awful and affect your quality of life for no benefit and is not needed for the dcis that was found.  I know hard when you have had an undexepcted diagnosis but be thankful that what was found was actually stage 0 , barely cancer in effect and you should focus on your general health and well being to keep you well and strong and be thankful. All the best

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    Hello Happygirl1981,

    Be diligent and always check yourself for lumps etc. I had a very similar scenario to you. I had a double mastectomy for intermediate grade DCIS. I also enquired about adjuvant treatment and follow up screening.  I was also given replies that if anything I had been over treated,  told to relax and enjoy life. I had a similar family history to you, and no gene predisposition was found on genetic testing.  3 years later, I found a lump in my axilla (arm pit). Even my surgeon dismissed it. I then had months of persisting to be seen again. It turned out to be a highly aggressive grade 3 breast cancer that had already spread to nearly lymph nodes. I then had 15 months of gruelling treatment with many long term side effects.

    It is not my intention to scare you, but always listen to your body and if you are worried about anything get it checked. 

    Good luck with everything. 

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    Hi Happygirl

    I hope you’re feeling well.

    I have been in a similar situation to you.

    Earlier this year, I was diagnosed with DCIS. The biopsy showed both intermediate and high grade cancer cells. After a wide local excision 5mm of cancer cells were confirmed, but I needed a second operation to get clear margins.

    After that operation, I was so relieved to find out that intermediate cells only were found and I wouldn’t need radiotherapy, which I was expecting.

    My mum had breast cancer and an aunt, so I have some family history too. But no genetic testing was done, so I’m not sure if there was an increased risk of breast cancer or not.

    I was also really happy to find out that I wouldn’t need any hormone therapy either.

    So far I’ve done a couple of monthly checks and have phoned my key worker cancer care nurse at the hospital. She had been able to put my mind at rest, when I have any concerns. I have open access for the next 5 years, so can phone the hospital directly. Over that time I’ll be having yearly mammograms for both breasts. 

    I know that the breast cancer I had was non invasive and was found really early through screening. I feel really lucky.

    Although I have had some complications after my second operation, I am recovering and concentrating on my health and wellbeing. 

    I am determined to be as healthy as I can.

    My treatment has been different to yours. If it helps, it sounds to me as though you’ve had really thorough treatment.

    I would love to hear from you, if you get the chance.

    Fingers crossed that you are OK

    Take care 

    X

  • Offline in reply to Anna100

    Hi Anna

    How are you doing?

    I’m so sorry to hear that you weren’t listened to and then to find such an aggressive cancer.

    That’s tough!

    I’ve had treatment for DCIS and have started doing monthly checks.

    I keep a diary of my concerns and the advice I’m given.

    Throughout my life, I have come to know cancer knows no bounds. Many loved ones have now passed on and have had difficult times with cancer. 

    My mum had treatment for an invasive kind of breast cancer and has been OK for the last 30 years.

    If you can, I’d really like to hear from you.

    Take care

    X

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