Did I make the right decision for my dcis?

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Tadykins
Tadykins Member Posts: 12
edited August 2016 in DCIS (Ductal Carcinoma In Situ)

Hi, I had a lumpectomy for DCIS in march 2016. Grade 3. Radiologist said I do not need rads as she said it would be over treating me and would not benefit me enough because of the side effects.. I was happy with her decision and went home to get on with my life. Met a friend last week who is having chemo after having a lumpectomy for DCIS . She told me she will have to have radsrfor two weeks after chemo and must go on tamoxifen for two years after that. When she received her results after her lumpectomy they were very happy with everything and her margins were clear. She was told that an appointment with a radiologist for a chat would be her next move. The radiologist said all her results looked very good and they were very happy with them. They took a blood test at that time to check her hormone levels and she was told to go home as she did not need further treatment only regular mammograms from now on.she was called back, hormones sky high she said and now she is on chemo, rads to follow and tamoxifen to follow. It must have been an awful shock for her. I want to ask have any of you had this blood test? Do you think I should ask for one?

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  • Tadykins
    Tadykins Member Posts: 12
    edited June 2016

    Hi Kayb

    Thank you very much for your reply , it has helped me focus again. I think I need to find out more about my dcis results. I seem to have gone through all of this in a haze and I did not know what questions to ask and I totally left all the decisions about my dcis to the medics. My friend thinks she is on treatment because her hormones were too high. I don't know what to think about her situation but I do think there must be more to it that what she thinks. I hope she will be ok

    I will go to my GP and start there with my questions as he should have my results by now. I will then contact my breast care clinic if I feel I need more details explained. Thank you once again for giving me a push to get my head out of sand and take control.

    I live in ireland.

    Thanks


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  • Kkubsky
    Kkubsky Member Posts: 231
    edited June 2016

    I have to go along with what kayb wrote. Chemo is not for DCIS. Could your friend possibly be referring to hormone therapy as chemo? I have seen some people do that.

    I would explore a 2nd opinion too. Or get some more info about your pathology. I had a lumpectomy for grade 3 which was followed by radiation. I had comedo necrosis and negative receptors too. So I was told that there really was no choice regarding rads.

    DCIS is different for everyone. I don't know that there is one right answer. And I think second guessing yourself is pretty common. I have done it many times....should I have had a mastectomy? Should I have had longer rads instead of the Canadian protocol. But in the end, you make your decisions and then life has to go on.

    Try not to compare yourself with your friend or anyone else for that matter. Educate yourself regarding your own pathology, talk to a dr familiar with DCIS, do whatever treatment is best for you, and then go live your life!

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  • Tadykins
    Tadykins Member Posts: 12
    edited June 2016

    Thank you ladies for your replies and advice and very valuable information. I am going to get my pathology results etc and I will let you know what they are. The friend that I have mentioned previously is not a close friend and at the moment she is going through a personal bereavement so I will leave having a chat with her for a while. Will post here again soon and I am very thankful to you all for taking the time to reply to my post ❤

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited June 2016

    Just echoing all above. Might your friend be talking about a genetic test (BRCA-1, 2)? I'm not aware of any hormone blood test involved in any of this process. And I was iffy about rads but because of my Grade 3 and not being hormone-receptor positive (so no Tamoxifen-type drugs available to me), I was told doing rads would cut my probability of recurrence in half. Easy decision for me. It'll help to get your full pathology report. Also, just my opinion, I'd go straight back to your breast surgeon--involving a GP just makes the process that much longer.

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  • Tadykins
    Tadykins Member Posts: 12
    edited August 2016

    A big thank you to all you lovely ladies for your reply to my question. The information I have gotten reading this blog has been so helpful and reassuring that we are not alone in this our battle with DCIS. Since I have last posted here I have made a request for my pathology results. Am still waiting for them 😕 I have one question that maybe someone can help with. I have had my lumpectomy in march 2016 and I have not got any sensation in my nipple, is this normal? Does everyone experience this? I know some people might say that is a small price to pay but I am upset at what has happened and didn't expect it would be like this. I don't mind the change in shape but this upsets me as it is important to me. Would like to hear what happened for you?

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