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Topic: just diagnosed DCIS / LCIS

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

Posted on: Jul 14, 2020 08:44PM

everythingwillbefine wrote:

Hi,

I am 4 days away from my 48th birthday.

I just got diagnosed with left breast DCIS with intermediate grade and right breast LCIS/ ADH

Due to the size of my DCIS area is pretty big with a lot of small masses surgeon suggested mastectomy on the left side.

I am thinking what to do with right side. I am leaning towards double mastectomy. What do you ladies suggest?

Should I consider reconstruction or just go flat? Or do I have to do the reconstruction right away immediately after the surgery?

What is the recurrence rate for the future?

Dx 7/7/2020, LCIS, Right Dx 7/14/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 7/31/2020 Lumpectomy: Right Surgery 7/31/2020 Mastectomy: Left Dx 8/6/2020, LCIS, Right Dx 8/6/2020, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 12, 2020 05:14PM LivinLife wrote:

Just want to say "Hey" everythingw! Good hearing from you! How are you feeling? You certainly have a lot you are dealing with and trying to sort through....

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 12, 2020 06:51PM MelissaDallas wrote:

You need to understand LCIS better. Because the area you know about was removed does not mean there is not more of it in that breast because it usually does not show on imaging and often is diffusely through the breast. It is almost exclusively found as an incidental finding on a biopsy for something else. If there is more, the tamoxifen cuts your risk of it developing into invasivecancer by about 50%. Presumably it might help keep you from developing more LCIS, but I don’t know that for a fact.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Aug 12, 2020 06:54PM Beesie wrote:

"I really do not know how significant LCIS is. My surgeon did not sound that alarming with ADH and LCIS. And lumpectomy removed them already and she said it is a very small area."

Several of us have provided a lot of information about LCIS in this thread and your original thread in the LCIS forum. With all the discussion, I think you may have missed the point that the removal of the LCIS doesn't reduce your risk because it's not necessarily the area of LCIS that develops into breast cancer but it's the fact that your breast developed LCIS that means that you are higher risk to develop breast cancer in the future, in either breast.

The following study isn't directly relevant to you because it looked at women with LCIS who did not also have either DCIS or invasive breast cancer, but it highlights the risk associated with a diagnosis of LCIS:

Lobular Carcinoma in Situ: A 29-Year Longitudinal Experience Evaluating Clinicopathologic Features and Breast Cancer Risk https://www.ncbi.nlm.nih.gov/pmc/articles/PMC49346...

"For the entire surveillance population, the annual cancer development rate was 2% per year through the first 6 years after LCIS diagnosis with no evidence of a plateau out to 150 months of follow-up. Overall cumulative cancer incidence at 15 years was 26%....

One hundred seventy-three women took chemoprevention during surveillance without bilateral prophylactic mastectomy....The cumulative cancer rates for women who took chemoprevention compared with those who did not were 3% and 7% at 5 years and 12% and 21% at 10 years, respectively." Note that "surveillance population" refers to those with LCIS who did not have a BMX. "Chemoprevention" refers to Tamoxifen or an AI.
.


"I do know that my breast is very dense and that is my concern"

everythingwillbefine, you are premenopausal. It is normal to have dense breasts if you are premenopausal. 75% of women in their 40s have dense breasts, either heterogeneously dense or extremely dense.


For women with dense breasts, a combination of mammogram screening plus ultrasound screening is usually recommended. Sometimes MRIs are done instead of ultrasounds but more often, MRIs are brought in at the diagnostic stage, if something appears unclear on the mammogram and ultrasound screenings.

.

Just my perspective, but to me the most important question in your case is whether the risk from the LCIS is cumulative to your risk from the DCIS or not. As I see it, those are the two factors that present you with the greatest future risk.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 12, 2020 07:16PM - edited Aug 12, 2020 07:24PM by everythingwillbefine

this is so depressing to know:(

But many thanks Beesie and Melissa!

I think I will discuss with my 2 MO in depth in 9/1 and 9/2 and get on tamoxifen and prepared mentally for the MX on the right side in the near future. Argh

I am not sure how my husband will feel about my decision and my families were all against my decision of bilateral this time


Dx 7/7/2020, LCIS, Right Dx 7/14/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 7/31/2020 Lumpectomy: Right Surgery 7/31/2020 Mastectomy: Left Dx 8/6/2020, LCIS, Right Dx 8/6/2020, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 12, 2020 10:34PM Beesie wrote:

I'm really sorry that you find the information to be depressing. It's not new information though - it's the same information that was discussed in this thread almost a month ago, and similar to the information that was provided to you initially by your surgeon (which, granted, is very different than what she told you this week). It's the same information that you had prior to making your surgery decision. You made your decision for a reason. Your pathology results were good. So has anything changed? LCIS is a significant high risk factor, but keep in mind that you really need the input of the MO to understand your risk level - as I said, I don't know how the LCIS plays into your future risk since you've already been diagnosed with DCIS.

Whatever decision you make, what does your family have to do with this? This is your risk, your body and your life.

Your husband's job is to support you in ensuring that you make the best decisions for your long-term health, whatever those decisions turn out to be.

Remember, this is about what is best for you. I'm not trying to scare you or depress you but want to ensure that you are armed with the right questions to ask the MO. Ask the questions, have a good discussion (and challenge the answers if they don't seem right - like your surgeon saying your risk is 2% over 10 years after telling your previously that it was 14%), and then decide if you are happy with your decision and want to stay down this path, or if you want to change direction.



“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 18, 2020 12:01AM - edited Aug 18, 2020 12:07AM by everythingwillbefine

I picked up my 5mg tamoxifen a few days ago.

I have not started it yet but will for sure

I want to wait until after 9/1 and 9/2 my appt with oncologists

I want to know if there is any baseline bloodwork and ultrasound I should have. Also I want to confirm the effectiveness of the low dose

Today my surgeon's nurse called me to check on how I am doing with tamoxifen........

I love my surgeon. She is so thorough and following up with me but I have not started it yet

I told the nurse why.

She said she will report back and let me know if my surgeon want me to get on the pill right away

Is it matter? To wait till after my appt with oncologist?

Dx 7/7/2020, LCIS, Right Dx 7/14/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 7/31/2020 Lumpectomy: Right Surgery 7/31/2020 Mastectomy: Left Dx 8/6/2020, LCIS, Right Dx 8/6/2020, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 18, 2020 12:32AM Beesie wrote:

No, it doesn't matter. And Tamoxifen should be prescribed by an MO not a surgeon, so waiting 3 weeks to talk to an MO is perfectly reasonable.

Keep in mind too that the Tamox is prescribed not to address your current diagnosis of DCIS - with the MX, no additional treatment would normally be recommended or required - but because you are high risk to develop a new primary in your contralateral breast. So it is addressing future risk. And while Tamox will significantly reduce your contralateral risk, taking it as a high risk preventative is entirely optional. You can start now or you can start in 6 months or in 6 years (6 years wouldn't be my recommendation given the LCIS and history of DCIS, however).


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 18, 2020 03:55AM everythingwillbefine wrote:

Thank you Beesie! That is what I thought too

Dx 7/7/2020, LCIS, Right Dx 7/14/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 7/31/2020 Lumpectomy: Right Surgery 7/31/2020 Mastectomy: Left Dx 8/6/2020, LCIS, Right Dx 8/6/2020, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 18, 2020 06:59AM LivinLife wrote:

Glad you're following up with second opinions so you are comfortable with what you're doing....

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 1, 2020 10:48PM - edited Sep 1, 2020 10:50PM by everythingwillbefine

I see a good amount of ladies on here also had their ovaries removed as preventative measure.

I wonder without the family history of ovarian cancer and without the gene mutation, how much does the personal history of breast cancer will increase one's ovarian cancer risk

Ovarian cancer is deadly. and hard to detect early. Is it worth doing preventative surgery?

Also I read the vitamin C D B6 and B12 and E are helpful of reducing the risk of breast cancer. Is everyone on here taking them on daily basis? At what dosage?


Dx 7/7/2020, LCIS, Right Dx 7/14/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 7/31/2020 Lumpectomy: Right Surgery 7/31/2020 Mastectomy: Left Dx 8/6/2020, LCIS, Right Dx 8/6/2020, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 1, 2020 11:15PM Beesie wrote:

Generally ovary removal is done to reduce estrogen and breast cancer recurrence risk, and/or so that the patient can take AIs instead of Tamoxifen (although I think ovarian suppression may be more common for this). Except for those with a genetic mutation that predisposes them to both breast caner and ovarian cancer, there is little to no increase in ovarian cancer risk after a breast cancer diagnosis.

Ovarian cancer risk after breast cancer https://www.facingourrisk.org/understanding-brca-a...


" Women with a family history of breast and ovarian cancer but no identified BRCA mutation have an elevated risk of ovarian cancer after breast cancer, but the exact risk is unknown. Research on ovarian cancer risk associated with mutations in BRIP1, RAD51c, RAD51d, and other genes found on many expanded panel tests remain an active area of research. Survivors with a family history of breast cancer only, (no ovarian cancer in the family) but no known mutation in the family, may not have an elevated ovarian cancer risk. A study on women from families with an extensive history of breast cancer but without a BRCA mutation found the risk for ovarian cancer was similar to women in the general population. "

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Sep 1, 2020 11:27PM - edited Sep 1, 2020 11:31PM by everythingwillbefine

beesie, that is great to know. Thanks for the information!

You are so knowledgeable:))

Dx 7/7/2020, LCIS, Right Dx 7/14/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 7/31/2020 Lumpectomy: Right Surgery 7/31/2020 Mastectomy: Left Dx 8/6/2020, LCIS, Right Dx 8/6/2020, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 3, 2020 07:45PM - edited Sep 3, 2020 07:48PM by everythingwillbefine

9/1 and 9/2 I had appointments with 2 different MOs. I had a feeling that the 1st one did not think I should come see him. Although the 2nd one told me the same thing that I should just follow up with my surgeon but she was very patient and answered my questions. I talked about my concerns with LCIS and asked how much risk of cancer with that condition. Both told me 1% every year and hopefully tamoxifen can help cut it to 50%. And I should follow up twice a year with screening and ultrasound. The 1st MO said the low dose only had 1 trial and he recommend to start with 20 if I cannot tolerant I can back down to 10 or 5, but he also said I can do 5 too it is better than nothing.

The 2nd mo is in the same hospital with my surgeon so I am not sure whether they all agreed on tumor board the new protocol of low dose. She said the low dose is prefect fine and she see no reason why I should take 20 while I can take 5 for same effect with less side effect.

I started tamoxifen 5mg yesterday.

I will have a ultrasound to check my uterus at my OB office tomorrow for the baseline.

My next appt with my surgeon is in Jan 2021.

Dx 7/7/2020, LCIS, Right Dx 7/14/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 7/31/2020 Lumpectomy: Right Surgery 7/31/2020 Mastectomy: Left Dx 8/6/2020, LCIS, Right Dx 8/6/2020, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 4, 2020 07:26AM LivinLife wrote:

It sounds like you feel more settled in your treatment plan after talking with the two MO's. I wish you well with the ultrasound and going forward with low dose Tamoxifen.

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 4, 2020 08:13AM everythingwillbefine wrote:

thank you Liveinlife

Dx 7/7/2020, LCIS, Right Dx 7/14/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 7/31/2020 Lumpectomy: Right Surgery 7/31/2020 Mastectomy: Left Dx 8/6/2020, LCIS, Right Dx 8/6/2020, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 15, 2020 09:44PM everythingwillbefine wrote:

msh2 variant

Today I had a gyneoncologist appt. I made this appt just to see if taking tamoxifen I should be monitored by gyneoncologist instead of OB. To my surprise, she was not concerned about tamoxifen but she concerned about msh2 variant that I have. Although it is unknown variant she said it still rang a bell. She said if it is a known variant she for sure would suggest removing my ovaries and other lady parts, but since it is unknown it is still a concern that I should repeat the gene testing every 3 years just in case any updates in the database for what I have.

I actually Like her recommendation and will try to remember to repeat the gene testing every 3 years.

But the concern she has about this variant made me worried.


Dx 7/7/2020, LCIS, Right Dx 7/14/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 7/31/2020 Lumpectomy: Right Surgery 7/31/2020 Mastectomy: Left Dx 8/6/2020, LCIS, Right Dx 8/6/2020, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 16, 2020 07:16AM LivinLife wrote:

Glad you are comfortable with the gyn and her recommendations. I agree we cannot ignore variants where there is more info. to be gathered yet. We do not know yet whether these add or detract from concerns. I was diagnosed with a variant as well - cannot remember the exact letters. Either way I looked it up and it said it can mean greater colon cancer risks while more info. needs to be gained about the variant. Interestingly there is a colon cancer history on my mother's side and I got a 5 year call back after my last colonoscopy. Just let's me know to be even more vigilant about these types of screenings. Sounds like you will be too. Interesting as well about your gyn's recommendation to get retested (genetics) every few years.... Hope you continue healing well from recent surgeries!

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 16, 2020 09:08AM everythingwillbefine wrote:

thank you livinlife,

I recovered very well fortunately. Hope you have a speedy recovery too.

I agree we need to be on top of everything we can think of. And following up appointment, request more testing etc.

Hop we all never have to deal with any surprises in the rest of our lives any more!!!!

Dx 7/7/2020, LCIS, Right Dx 7/14/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 7/31/2020 Lumpectomy: Right Surgery 7/31/2020 Mastectomy: Left Dx 8/6/2020, LCIS, Right Dx 8/6/2020, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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