Topic: DCIS, too much info, just saw biopsy result, confused

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Nov 22, 2022 07:16AM

Posted on: Nov 22, 2022 07:16AM

starsnow77 wrote:

I just saw my biopsy result on the medical page. My Dr appointment is not till Tues the 29th. I had rt breast discharge, MRI showed 'something" decided to do a excision biopsy. Had that the 18th...still sore!

Results show DCIS, grade 2. there's a bunch of other stuff I don't understand, even with looking it up. There's way too much info out there..and it gets confusing. I know I need to talk to my dr...and I am writing questions out for him.......

I understand this is the "better" type of cancer to get..but can still mean mastectomy and treatment?

My head is not in a good place right now......I'm 65, no kids...hubby and dog and cat no family...feeling kinda worthless and why bother.

any guidance. I truly felt all would be fine, was not worried...and WHOMP

just connecting thank you

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Nov 24, 2022 08:49AM purplecat wrote:

Hi Starsnow, I'm so sorry you got these results, and in a way and at a time when you have to wait so long for someone who can advise you on them. Those patient portals are a blessing and a curse. It's great to be able to see results right away, but when we don't really know what any of it means, we can only imagine the worst for hours and days until someone can give us real information specific to our own situation. I don't know what's ahead for you, but I know you are going to feel better after you have answers from the surgeon. I'm sorry it's such a long wait.

As for DCIS, it looks like you've found some good information, so I will just share my experience. Your treatment maybe different, but if it eases your mind at all to have some idea what might be ahead, here's my story:

I had something show up on a mammogram and had a core needle biopsy, where they stuck in a hollow needle and pulled out several clumps of cells that turned out to contain DCIS. They called to tell me in a very reassuring phone call. Basically, no one ever dies from DCIS, they said. We need to get it out because sometimes it can develop into invasive cancer, and we will treat it with radiation and hormone blockers just in case any more is trying to develo. But there's also some thought that in some cases it's OK to just leave it alone, because apparently they find a fair amount of DCIS in autopsies of women who lived normal lifespans and died of normal causes! My doctor even mentioned studies where people opt not to treat it at all, just watch it carefully, because they would like to figure out which types can be safely left alone so as not to subject women to treatments and side effects they don’t actually need.

My case turned out to be a little worse than that. I had surgery to remove the tumor, and the final pathology found a small bit of invasive cancer. Apparently that can happen in needle biopsies, because the needle just pulls out samples and not the whole tumor. I had to go back for a second surgery to remove and check lymph nodes. But they were clear, and with one thing and another I ended up at stage 1a instead of stage 0. I had exactly the same treatment I would have had with just DCIS - surgery, radiation, hormone blockers - and four years later I have had some trouble with scarring but no sign of recurrence.

In your case, it sounds like you've already had the entire tumor removed and thoroughly inspected, so you won't have to wonder if a needle biopsy missed anything. Did you have a MRI as well? If so, and if this is the only thing that was spotted, and they didn't find any invasive cancer in this tumor but just DCIS, then you may very well now be cancer free! With a sore boob, but cancer free! I was told that DCIS is never treated with chemo, so unless something has changed since my diagnosis, that shouldn't be on your treatment plan. Radiation and hormone therapy are often part of the picture for a DCIS patient, but depending on your specifics you may be able to skip one or both and just be done. I hope this is the case for you, but if not, it's do-able. Not fun, but do-able.

Again, I’d never want to predict what your treatment will be, but maybe it helps to have one story of a person who heard she had DCIS and is now OK.

As for support, these boards have been great but have been sort of quiet lately. And right now a lot of people are probably taking a break for the holidays. You do need support, and lately I’ve found some of that through an online Gilda’s Club group. Depending on where you live, you might also be able to attend one in person. Your surgeon may be able to put you on to local or online options as well. It’s so helpful to be able to to share experiences and feel less alone.

Hang in there! I know how hard it is to wait

Dx 10/2018, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/4/2018 Lumpectomy Surgery 10/18/2018 Lymph node removal Surgery Hormonal Therapy Femara (letrozole) Radiation Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 24, 2022 04:16PM moderators wrote:

starsnow, we're sorry to hear about your biopsy results, but glad you found us and decided to reach out to our members. We know the first few days and weeks following a diagnosis can be overwhelming and frightening, also with a lot of information to process, but we are all here to help you!

Until your next appointment, you may find some helpful information here: Understanding Your Pathology Report, where you'll learn more about the characteristics of the cancer and treatment options. Also, to help decipher breast cancer shortcuts seen throughout the boards, check out this handy abbreviations and acronyms list.

Hope this helps! Please come back to let us know how you're doing!

The Mods

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Nov 24, 2022 06:50PM mavericksmom wrote:

Hi Starsnow, relax, you do have the best type of breast cancer, if there is such a thing. I have had breast cancer three time, the most recent was for DCIS with microinvasion. I had a mastectomy in October, but before you panic, it wasn’t because of this diagnosis as much as because I had IDC in 2003, treated with two lumpectomies (second for clean margins), chemo, and radiation. In 2019 I had ILC in same breast., treated with mastectomy with reconstruction. I wanted a bilateral mastectomy and was refused, supposedly due to a hospital policy of not removing a healthy breast. Also, my mother and two of three sisters had invasive breast cancer. I am not BRCA positive. I am on Letrozole, but not for the DCIS but due to the ILC I had in 2019.

I have absolutely zero concern about my recent DCIS. I am no breast cancer expert, for me it was like having breast cancer for the first time three times! You will have choices of treatments and you definitely won’t have to rush into a decision. By the way, I am in my late 60’s.

Seriously try to relax and definitely do not worry! You will be fine!

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2-
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Nov 25, 2022 07:28AM starsnow77 wrote:

I'm sorry you got hit with so much.

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Nov 25, 2022 07:32AM - edited Nov 25, 2022 07:32AM by starsnow77

Moderators, Thank you so very much. I KNOW this is the best cancer to get, but it still is cancer. It is unexpected and I am blind sided. Thank you for your understanding and words...and reference.

This is like the old party game of having a blind fold on, being spun around 10 times, then told to walk down the path. no matter how steady you are, you're going to wobble.

Thank you

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Nov 25, 2022 03:45PM harley07 wrote:

@starsnow77 - I’m so sorry you find yourself here. It is indeed a scary and confusing time. I think sometimes in our effort to reassure newly diagnosed BC patients, we can inadvertently send a message that it is ‘no big deal’ and of course it is a very big deal when it is happening to oneself. Wishing you the best at your appointment next week. If you feel like it, please keep us updated.

RAD51D mutation Surgery 11/5/2020 Lumpectomy; Lumpectomy (Right) Dx 11/10/2020, IDC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 11/20/2020 Lumpectomy; Lumpectomy (Right); Lymph node removal Radiation Therapy 1/8/2021 Hormonal Therapy 2/8/2021 Arimidex (anastrozole)
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Nov 25, 2022 05:08PM - edited Nov 25, 2022 05:09PM by quietgirl

I thought I posted yesterday but apparently I didn't hit submit. One of the hardest things I think is that while there are times we want to compare ourselves so a) we don't feel like we are going it alone or b) so we can try to predict (insert evil laugh here) how things are going to go. I don't think the second ever works quite the way we might hope since even if we have the same type of cancer in general that doesn't mean there isn't 89 million different things that impact us. So yes DCIS is an example of why early detection can be a great thing but your journey through it can be remarkably different. Some people breeze through treatment and others not so much. If they in fact got clear margins from your excision biopsy (can I just say I kept typing exercise why I don't know or spell check just wants me to exercise) then you might be done with surgery but DCIS can result in mastectomy or lumpectomy (also called partial mastectomy) or a wait and see approach (since there is a school of thought that DCIS might be being over treated there are some studies currently being done with delay surgery). Either your doctor will give you the options. Other treatments will vary depending on your wants/needs/situation. Radiation followed by an AI is often the 'standard' of care to lower the risk of a reoccurrence but some people opt out of either or both and for some the risks involved with either are not worth the reduction in reoccurrence risk. I know I'm not giving you a lot of information you can't get anywhere else but I think it's important to remember even though it doesn't feel like it you are in the drivers seat in terms of what you do or don't do

Now probably more importantly I think it's important that you use what services your doctors offer you in terms of support that is available. Therapist, dietitian (seriously why not) support group etc. Don't let the idea that it's “only" (I won't go into how I feel about that that word) DCIS make you feel like you are unworthy of being those things. None of my doctors ever approached DCIS as anything less or more than what it is. Because surgery is still surgery and radiation is still radiation and it still sucks. Finally if you end up doing radiation and they offer you a chance to pick the music you list to. Pick it. I so wish I had for all 19 days but I only did on Fridays.

I will be thinking of you on Tuesday and keeping you in my thoughts (and prayers if you want them) between thenand now.

Surgery 2/7/2022 Lumpectomy (Right) Radiation Therapy 3/9/2022 Whole breast, Radiation boost: Right breast Hormonal Therapy 4/18/2022 Arimidex (anastrozole) Dx DCIS, Right, 3cm, Stage 0, Grade 2, ER+/PR+
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Nov 25, 2022 05:20PM starsnow77 wrote:

Harley07 thank you so much. I KNOW it could be worse...and I am lucky....but it is cancer. and that's scary. So scary. and this is not a path I thought would happen......I must say it hurts to be told No big deal. I have to go through another surgery, I have to go through radiation, and I have to go through the haunting of is there more, did they get it all what's next.

Thank you so much for the kindness of your words and understanding

wishing you the best

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Nov 26, 2022 07:37AM quietgirl wrote:

Forgot to say you will probably end up needing to see more than one doctor so don’t be alarmed if they start trying to schedule you with multiple people. Surgeon (which I’m sort of assuming is who you are seeing on Tuesday ) Radiologist Oncologist (RO) who would go over all that is involved with that and a Medical Oncologist (MO) who would talk to you about possible prescriptions that you might need to consider after the fact (if chemo was in the plan they would be the one to handle that) Just wanted to throw that in so it doesn’t comes as a shock if they start talking about a bunch of other people My RO and MO gave me lots of information on paper so most everything they were saying to me was also written somewhere (so while it can be overwhelming there is something you can refer back to

Surgery 2/7/2022 Lumpectomy (Right) Radiation Therapy 3/9/2022 Whole breast, Radiation boost: Right breast Hormonal Therapy 4/18/2022 Arimidex (anastrozole) Dx DCIS, Right, 3cm, Stage 0, Grade 2, ER+/PR+
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Nov 26, 2022 07:45AM starsnow77 wrote:

Thank you! I am very comfortable with my surgeon. Am not thrilled about seeing other/more medical people but thank you, I understand that is part of this. It all adds up, doesn't it/ I mean all these extras. no wonder it is overwhelming no matter how "good" of a diagnosis thank you quiet

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