DCIS

StellaNorth

Hi everyone. I'm switching boards here from Waiting for results. I already appreciate the warm welcome and support I've received on this site.

I have DCIS, 4cm. Grade 2. That's all I know so far. I'm waiting for the call from a surgeon and hoping they'll put more info on my health portal. I'm 42 years old with two kids.

I'm wondering what I have coming. Lumpectomy? Mastectomy? Radiation?
I was just about to start training for a half marathon. How long until I get my “normal" life back? I'm grateful to have caught this so early. I know I'll be ok. I'm just sad and scared right now.

Thanks everyone.

Update: I have an appointment with the surgeon on 3/23. The waiting continues

Beesie

Stella, sorry to hear that you've been diagnosed.

To get you started on DCIS, you might find this thread helpful:

Topic: A layperson's guide to DCIS https://community.breastcancer.org/forum/68/topics...

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As for the surgery decision, with a 4cm tumor, the first question is whether a mastectomy will be medically feasible. If you are large-breasted, it probably is. If you are small breasted, it may be more difficult to achieve acceptable surgical margins with a lumpectomy. This is something that the surgeon can advise you on.

Have you had an MRI? With a large area of DCIS, an MRI might be helpful in defining the size of the area of concern. In my case, I'd been hoping to do a lumpectomy but the MRI showed my area of DCIS to be larger than what was seen on the mammogram, which made it clear that a mastectomy was the only option. Some surgeons like to have MRIs done prior to surgery, others don't.

After a lumpectomy, rads will be done. After a MX for DCIS, usually rads isn't necessary, although in rare cases it is recommended if the DCIS is right up against the chest wall, with no clear surgical margins.

Here's another thread from the DCIS forum that you might find helpful:

Topic: lumpectomy vs mastectomy - why did you choose your route? https://community.breastcancer.org/forum/68/topics...

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An important point. With a needle biopsy, the results are preliminary. In about 20% of cases where DCIS is found in a needle biopsy, the final surgical pathology upgrades the cancer to IDC. Fortunately in most cases, it's just a microinvasion or small T1a or T1b tumor. Hopefully your final diagnosis remains pure DCIS, Stage 0, but you should go into surgery aware of this possibility.

Now long to get back to normal life? If your final diagnosis is DCIS, you will not need chemo - chemo is never given for pure DCIS. If you have a MX, that might be your only treatment, although with a single MX, or you may choose to take anti-hormone therapy (a daily pill) for 5 years to protect your remaining breast. If you have a lumpectomy, it will be followed by rads (6 weeks usually but there are different options) and if your cancer is ER+ (i.e. driven by estrogen), it will be recommended that you take anti-hormone therapy for 5 years. If your final diagnosis remains pure DCIS, the treatment plan is pretty straightforward, whereas with invasive cancer there are a lot of different treatment paths depending on the pathology and biology of the cancer.

Hope that all makes sense!

StellaNorth

Thank you so much Beesie. I really appreciate it. I wouldn't consider myself large breasted. I'm a C cup. And no MRI (yet?)

Thank you for all the information and support.

tntnsd

Hi Stella,

So sorry that you have to be on this board, going through this with 2 kids.

Yes, you will need to talk to your breast surgeon, radiation oncologist and possibly plastic surgeon if you discuss your options. There’s very, very helpful link that Beesie created for DCIS (I can’t stress it enough) to understand your dcis diagnosis at this point means, and decisions/steps going forward.

My diagnosis was similar to yours (6cm of dcis), and thank goodness, it stays like that until the final pathology after surgery. I did not choose reconstruction for my mastectomy so my recovery fairly easy. I was able to come back to work (desk job) after a bit more than 3 weeks, and walk about 5 miles/day after 4 weeks. However, my surgeon, and nurse advised that no running until fully heal, which I think at least 6 weeks (I am at my 5 weeks after surgery now, and I feel more80% back, we need to listen to our body, and be careful with other risks of bread cancer surgery/treatment).

I used to ask when will my normal life back too, but learned that I need to adjust that “normal” life to allow my body and mind heal. I am not thinking about this 24 hours a day anymore, sleeping ok so far. To me, life does return to “normal” a month or so after this.

You will be able to do this. Hang in there.

StellaNorth

Thank you so much tntnsd! I really appreciate it

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Twinkle-09

StellaNorth:

I was diagnosed with DCIS on Nov 23, 2020. I had a lumpectomy on Dec 30 (1.2cm, stage 0), and thankfully, the margins were clear and it was only DCIS. I went back to work on Jan.10, so 12 days after surgery. I had 20 sessions of radiation that I finished Wednesday, Mar 3. My Oncologist has talked about hormone therapy since my DCIS was estrogen positive, but I have not decided if I will do it. I want to get back to “normal”! If I do the hormone therapy, it will be AI rather than Tamoxifen because of the antidepressant I’m on. I feel the decisions are incredibly difficult. With my small size of DCIS, some would not even have done the radiation. It was my left breast and I worry if it might have affected my heart, which I will only find out later in life. Maybe I should have had a mastectomy?? I pray about all of this, because I know God is in control. I wish I had more women to speak with - there are so many women with breast cancer, yet I felt so alone. I met many wonderful women in the radiation waiting room. I don’t miss the radiation, but I miss talking to them everyday. Praying for you

Lille

Hi Stella, I'm sorry that you've received this diagnosis as well. I was diagnosed last June 2020 at 42 years old as well though I have no children. The links posted are great resources though feel free to post any questions you might have. It's likely that you will be scheduled for an MRI next, generally they want you to do an MRI within so many days of your cycle. Different imaging will show different things. You will probably also be presented the option for genetic testing, for me it was a simple blood draw however it can take a few weeks to get the results back. As for lumpectomy vs mastectomy you may or may not get an option between the two. It will depend upon the pathology, size, and location of DCIS and if there are any other areas of concern. None of it is fun, it sucks, and it's alright to be sad and scared. Just keep hanging in there as best as you can. How long will it take to feel normal? That's different for every one of us and often we find a new sort of normal.

StellaNorth

Thank you all so much. I so appreciate it.
I’m going through and reading all this great information and more and trying to absorb it all.
I’m hoping I’ll get a call from the surgeon today.

Ok, so I won’t know if it’s IDC until after surgery. Understanding I may not have a choice of surgery here’s what I’m seeing is likely but pending tests -

Lumpectomy then radiation and probably hormone therapy

Or

Mastectomy no radiation. Do they do hormone therapy after this since just one breast is removed?

Even if I do a mastectomy I’m assuming there’s still a chance if chemo and needing to remove lymph nodes if surgical pathology come back with IDC?

Is the main benefit of lumpectomy vs mastectomy keeping the breast and shorter recovery? But then there’s more of a chance I’d the cancer recurring?

Thank you again ladies. You are amazing. I am going to look through all this again. I just like to her as prepared as possible.

Jelson

StellaNorth - re: training for half marathon. I had lumpectomy and 7 weeks of radiation at age 59 and kayaked - energetically! almost daily. Don't assume you won't be able to continue training.

Beesie

"Mastectomy no radiation. Do they do hormone therapy after this since just one breast is removed?"

Probably no rads after a MX but in rare cases this could change if there is cancer at the margins.

If the diagnosis is pure DCIS, then hormone therapy after a UMX is optional since it is only for protection of the remaining breast. If the diagnosis is IDC, then hormone therapy is recommended even after a BMX (exception being if the IDC is just a microinvasion).

"Even if I do a mastectomy I'm assuming there's still a chance if chemo and needing to remove lymph nodes if surgical pathology come back with IDC?"

If you do a MX, a sentinel node biopsy will recommended at the time of surgery even though the preliminary diagnosis is DCIS. This is because an SNB cannot be easily done after a MX, if it should happen that some IDC is found in the final pathology. With a lumpectomy, an SNB is not necessary when the preliminary diagnosis is DCIS because the SNB can be done as a quick second surgery should some IDC be found.

If invasive cancer is found and chemo is required (which is often isn't even with invasive cancer), the type of surgery (lumpectomy, UMX, BMX) makes no difference in the chemo recommendation. Chemo is to treat systemic (whole body) risk, not specifically the breast.

StellaNorth

Gotcha. You are a Godsend Beesie!

Jelson, thank you for sharing! I just put my running clothes on.