Path report received today

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BluGene
BluGene Member Posts: 44
edited October 2018 in Just Diagnosed

I’ve been lurking here since August. I’ve posted a few times in interpreting your report and under the genetics section.

I’m 35 (today!) and found out today I have DCIS. Three calcifications were extracted last week with ultrasound guided needle, and I was set to have an excisional on another area of micro calcs next Monday. Turns out they are changing it to a lumpectomy and hopefully they will get it all.

I will be following that with radiation (I guess I have to start lurking on those threads!), and then likely a double mastectomy. Given my gene (RAD51D), and that it’s being more and more related to triple negative/aggressive cancers, Extensive family history with negative outcomes, that I have other microcalcifications, and that I have many years ahead with these breasts, I think my sound decision is to do dmx with reconstruction.

It’s almost a blessing in disguise. Finding this so early, all thanks to doctors who believed in screening me before 40, and for me staying on top of my health and awareness. Catching it so early...wow. It’s kind of amazing!

Not that I’m looking forward to all the next steps, but I’m anxious to get started and to be on a path to healing.

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  • Fritzmylove
    Fritzmylove Member Posts: 330
    edited October 2018

    So glad to hear you have an amazing set of doctors that were instrumental in you catching this so early! Good luck with surgery, and here’s to many more cancer free birthdays for you

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  • BluGene
    BluGene Member Posts: 44
    edited October 2018

    Thank you!

    I’ve worked the last two days like nothing has changed. Maybe I’m overprepared, maybe it’s cause DCIS isn’t that scary, or maybe it is and I don’t know. Either way, I’m in good spirits, but I really do need to start looking into what having radiation means. I’ve never looked that far yet since there wasn’t a reason for me to. If anyone has any tips or links, I’m all ears

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  • star2017
    star2017 Member Posts: 827
    edited October 2018

    so glad you caught it. I felt the same way last year.


    Radiation wasn't terrible. It's annoying bc it is daily, and your skin will be unhappy, but hopefully it will heal. I was pretty religious about applying aloe and aquaphor as recommended by my doctor and my skin has recovered well. If you have questions please don't hesitate to ask. I had 30 sessions.

    Happy birthday!



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  • JosieO
    JosieO Member Posts: 314
    edited October 2018

    BlueGene,

    First, let me also wish you a Happy Birthday.

    I join in giving thanks that you have such a great group of doctors-I truly believe it makes all of the difference.

    Ask a lot of questions to know as much as you can about the plan and what you can expect.

    I was diagnosed via biopsy with invasive ductal carcinoma, but when my surgeon opened up the area I had a significant amount of DCIS which had not been detected on mammogram, ultrasound, or even biopsy. Fortunately my surgeon was highly experienced, quick to think it through and he was able to remove all of my DCIS as well as the tumor and surrounding tissue.

    I had a lumpectomy, no chemo, but as my cancer is highly positive for estrogen and progesterone, I knew that long term hormone therapy would become my treatment. Also radiation to kill stray cancer cells

    Star and I had similar radiation treatment around the same time, and I know we found the radiation section very helpful to ask questions and compare notes. As Star says, she was diligent about cream use. For me, going to daily radiation helped me to fight off the potential fatigue and I felt good almost every day.

    Will watch for your progress notes and encourage you on your journey.


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  • Zoisite
    Zoisite Member Posts: 27
    edited October 2018

    BlueGene, Happy Birthday I am so sorry to hear about your diagnosis. I have a question for you can you do the dmx with reconstruction instead of lumpectomy? Maybe skip radiation if possible? I had lumpectomy and radiation then ended up having to have dmx when they found more cancer. Reconstruction can be more complicated after radiation some women can skip radiation all together if the have a dmx. I have had done problems with the skin and muscle that was radiated. Either way I wish you all the best.

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  • BluGene
    BluGene Member Posts: 44
    edited October 2018

    Star

    Good to know and good tip about the skin. That sounds potentially very painful. My skin has never been good at healing. You can see every scar I've ever had, and I have stretch marks from my armpits to my calves that are very prominent. I peel, rash, and bruise easy. So that makes me think I'll have to be extremely routine and careful with my skin. Yikes. I know my grandma had radiation on her breast, and my mom told me her entire breast was “black." That was 30 years ago, though!

    How are you feeling one year out?


    Josie

    Thank you!

    I sure hope there are no surprises when they open me up. Were you prepared for that news? What does long term hormone treatment look like for you?

    If I only have DCIS, will they test those hormones out (I have to study up on those too, it appears). That gene I have has recently been related to triple negative cancer. So I'm curious if that comes into play at all.

    You say daily radiation gave you more energy? I would never have guessed that! Did you continue your normal days while dong so? Will I be able to work at the same time? Yes, I'll be asking these questions to my surgeon, but they are popping in my head as I type. :)

    Thank you so much for all the advice!


    Zoisite

    Funny you should ask that question because that's the first thing I said when my surgeon told me. She said she felt like it would be peace of mind getting it taken out while being on a waitlist. But now that you bring up how the rads can affect it, I'm going to take that into consideration. Especially, as I said above, I'm not a very good “healer". Did you have to get a lot of radiation?

    I also expressed my concerns about being under anaesthesia multiple times and under the knife etc. That's my only fear, being chopped up over and over and in a healing, cutting, healing circle.

    Because it appears to be so early on (I had a mammo 15 months ago and no note of my microcalcifications changing at that time), perhaps I can just wait for dmx. I'm a patient person, and I think my peace of mind will be fine just knowing it will all be taken care of at once.

    I have to decide by Thursday to cancel the lumpectomy or not. So I must start studying!

    Thank you all for the birthday wishes and support.

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  • star2017
    star2017 Member Posts: 827
    edited October 2018

    I can't believe it's been a year and we're still tweaking (I've got my exchange and prophylactic ovary/tube removal today). Maybe for me it's taken longer bc I was pregnant and also had to have chemo and radiation plus surgeries. But I'm looking forward to being done soon. I've already started feeling normal.

    Definitely let your doctors know about concerns regarding your skin. My skin got pretty grey/black but now looks normal, except that that there's a tan line around the treatment areas. Nothing too bothersome. Speak up if you have any concerns and hopefully the doctors will be able to give you what you need.


    Hi, Josie!



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  • Mariecali
    Mariecali Member Posts: 2
    edited October 2018

    I am new to this site and diagnosed yesterday with Invasive Ductal Carcinoma accompanied by Cribriform Ductal Carcinoma in Situ. My HER2 is negative and my Estrogen and Progesterone are both positive. The measurement of the spot was .6cm x.6cm x.7cm. I was doing ok after my biopsy and even yesterday after my results but woke up this morning nauseous and vomiting. I got the results from the Radiologist and I don’t see the surgeon until 11/9. Does anyone know what this means?

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2018

    DearMariecali,

    Welcome to the BCO community. We are sorry that your breast cancer diagnosis brought you here but glad that you reached out to our members. While you are waiting on some responses you may want to check out this link to more information on interpreting your report. Keep us posted on what you learn and stay active here. This community has a great deal of support and information to share from others who are walking a similar path. The Mods

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