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Topic: New Diagnosis. Looking bounce some thoughts off of you all

Forum: Diagnosed and Waiting for Test Results —

Share with and support others all waiting for test results from CAT scan, PET scan, Oncotype tests, Mammaprint, FISH, IHC, and other diagnostic tests.

Posted on: Mar 5, 2020 11:38AM

Mimi4me wrote:

I am newly dx. with DCIS stage 0. I know this is the "best" of the "worst" in some way and feeling lucky it had been diagnosed at this stage. I always expected a phone call like the one I got since both mother and grandmother passed away from breast cancer but both were in their late 60's 70's while I am in my early 50's. I am not overtly anxious about the situation but I feel like it would be helpful to speak with others - you all - and maybe gain some insights from your experience.

At any rate, I am currently waiting on genetic testing in order to help me make a decision between lumpectomy and mastectomy. I am struggling with two questions:

1. I had a couple of people mention to me about getting a second opinion. I am comfortable with the breast surgeon, the cancer was found during routine mammogram and I don't know why I would go for a second opinion.. am I missing anything??

2. My thoughts are that if I carry the genes I would go for mastectomy, however if I don't then I would need to make the decision - If I got with lumpectomy (breast surgeon thought I'd be a good candidate) it will be followed by whole-breast radiation which my understanding is would last several weeks (don't know how many) and would be daily- I am thinking about fitting that into my daily life, dealing with potential side effects (skin, feeling tired) - how difficult is/was it for you? then I would have have hormone therapy -any side effects? and after all said and done would have to alternate between MRI and mammogram every six month for at least 2 years - I am dreading more MRI's and I am worried about the "what if" my spouse loses job and thus insurance...

Ultimately I'll have to make a decision and it will be mine but I'm looking forward to any feedback and insights you might have to share with.

Thank you.

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Mar 5, 2020 11:55AM Moderators wrote:

Hi Mimi4me and welcome to,

We're so sorry for the reasons that bring you here, but we're really glad you've found us. You're sure to find our Community an excellent source of information, advice, and support -- we're all here for you!

You're sure to get some great responses here soon. In the meantime, you may find it helpful to read the thread from our own "DCIS expert," Beesie called A Layperson's Guide to DCIS in the DCIS forum, which can help answer lots of questions.

In terms of lumpectomy vs. mastectomy, there's also a great thread called Lumpectomy vs. Mastectomy -- Why Did You Choose Your Route?

We hope this helps and that you find clarity soon. Please keep us posted on what you decide and how we can help you along your treatment journey.

--The Mods

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Mar 5, 2020 11:56AM Ingerp wrote:

I've never sought a second opinion. I'm comfortable with my medical team, and had done enough research that I knew what treatment would be recommended for me.

Radiation is often either 33 sessions, or 20 ("Canadian protocol"), which is a higher dosage per session so you get the same total radiation either way. I had 20 on my left side, but was told that after chemo, the longer, gentler version is recommended because the skin is a little more sensitive. The appointments are five days a week but go very quickly (really--like 10 minutes in and out). Many women schedule them early in the morning or late afternoon. I live close to my treatment facility so usually went at lunch time, and didn't take any medical leave at all. *If* your genetic testing comes out positive, you'll probably get alternating mammos and MRIs every six months. If not, you'll only get annual mammos. Re: radiation SEs, mine were never bad. I had a few instances of fatigue each time (literally--maybe 2-3), which mostly hit the day after I'd had a really big day (we were getting our house/property ready to host a wedding while I was going through it in 2016). Many women handle rads without much disruption to daily life.

There are lots of threads re: Tamoxifen or an aromatase inhibitor. You will only be recommended to take one if your tumor is estrogen receptor positive. I won't say there are zero SEs, but many women find them tolerable, particularly with exercise. They can be an important part of a treatment plan (in my case, more important in preventing recurrence than chemo was).

Most important is to do your due diligence (which you're doing!), make a decision, and then don't look back.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/22/2016 Lumpectomy Surgery 4/19/2016 Lumpectomy: Left Radiation Therapy 5/17/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/12/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/17/2018 Taxol (paclitaxel) Targeted Therapy 5/17/2018 Herceptin (trastuzumab) Radiation Therapy 8/19/2018 Whole-breast: Breast
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Mar 5, 2020 01:25PM Mimi4me wrote:

Thanks Mods for the link to the two discussions.. I am finding the board a bit overwhelming - I'm sure as I "hang out" here more it will lessen - and I appreciate you pointing me in the right direction.

Ingerp thanks for sharing your story and thoughts. I was told that I will have to be on "high surveillance protocol" i.e. alternating between MRI and mammogram every 6 months for at least 2 years after lumpectomy. So, since it doesn't seem like the "normal" course it is probably because of the family history.. Can you clarify what is the benefit of "exercise" as you mentioned above when having hormone therapy?

I am grateful to you both.

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Mar 5, 2020 07:11PM Todd24 wrote:


I was dx with LCIS. I also had a family history. I did complete genetic testing with negative results. I thought I was doing a lumpectomy, but then had an MRI for a better view. It was found that the lump was much larger than they thought it was. I had small breasts and the team did not feel comfortable doing a lumpectomy as it would leave me deformed. The MRI also picked up another lump on that side and two more on the other that were not detected on the mammogram. I decided on a bilateral mastectomy. My BS wanted me actually forced me to have another opinion. So I did. It did not go well. I knew in my gut that I should have a bilateral mastectomy. The new doctor assumed, never asked what I wanted, that I wanted a lumpectomy and made it seem like no big deal. I was very unhappy with this interaction and stuck with my gut.

You will know the right decision for you. Best of luck! Hang in there.

Respectfully, Amber Todd
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Mar 5, 2020 07:49PM LiveLoveLaugh2020 wrote:

Mimi sorry you're having to face this. I was also diagnosed with DCIS. I opted to have bil NSM. In the beginning I thought about lumpectomy but after researching and really thinking about it I decided on MX. I'm glad I did, as my "normal" boob was diagnosed with LCIS. This is such a hard decision to make but I hope you make the best decision for you. Wishing you the best.

DCIS Dx @ 34 - Bil NSM 09/2019 - Bil implant exchange with FG 01/2020.
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Mar 5, 2020 07:58PM MelissaDallas wrote:

Todd24, you may want to delete your name. These boards are searchable in search engines. Anyone who googles your name will find your posts here

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Mar 5, 2020 08:34PM MinusTwo wrote:

Mimi - Sounds like you already know you're ER& PR positive since you're talking about hormone therapy. I know they didn't used to test for HER2 with DCIS, but I wish had forced that issue. My recurrence when cancer came back as was HER2+.

initially with DCIS I chose to have a BMX. Very glad I did because they found things in the 'good' breast too. Genetic testing wasn't prevalent then & because I was ER/PR negative, there was no other treatment. The equation might have been different if we'd known the HER2 status, but I did end up with a recurrence as IDC in two years.

As for second opinions - I was fixed on my oncologist since I'd known him before when he treated a friend, and he was doc of the year several times. Both my MO and longtime Gyn gave me several recommends. I did interview two different surgeons and two different plastic surgeons before making my choice. But even then with no chemo on tap, I let the MO drive the bus. After the recurrence when I needed chemo & rads, I also interviewed two different ROs, but that choice was largely made by the most convenient location since I had to go every day for 5 weeks.

There are positives & negatives for both selections. Good luck with your choices.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Mar 5, 2020 09:37PM Beesie wrote:

MinusTwo, just to say that HER2 status does not change the DCIS treatment plan - so even if your HER2 had been tested when you had the BMX for DCIS and you were found to be HER2, you still would have been offered no treatment after the BMX.

A couple of interesting facts about DCIS and HER2. First is that about 40% of DCIS diagnoses are HER2+ whereas only about 20% of invasive cancers are HER2+. So DCIS is much more likely to be found to be HER2+. Second is that the research is all over the map on whether HER2 status means anything for DCIS. There have been quite a few small studies and most show no difference in rate of progression to IDC or recurrence rate for HER2+ DCIS vs. HER2- DCIS. There have been a couple of studies that have found that HER2+ DCIS is more aggressive and more likely to develop into invasive cancer. But there have also been a couple of studies that have found the exact opposite, that HER2+ DCIS is actually less likely to develop into invasive cancer. And this is why HER2 testing is not often done on DCIS. There is no difference in the treatment plan, and there is no understanding of what, if anything, HER2 status means for DCIS. Of course this might change in the future as more studies are done and more information comes in, but I've been saying that for 14 years and so far nothing has changed - it remains confusing (why is more DCIS than IDC HER2+ ?) and unclear (what does HER2 status mean for DCIS?).

All that to say, Mimi, don't be surprised if you don't receive HER2 results. And if you do get HER2 results, they won't change the treatment plan.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Mar 6, 2020 05:58AM windingshores wrote:

To support what Beesie said, my biopsy was HER2+ but my post-surgical pathology of the whole tumor was HER2-. The possible explanation was that the biopsy had more DCIS in it and the post surgical samples were more IDC and ILC.

Dx 2/2015, DCIS/ILC/IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery Lymph node removal; Mastectomy: Right Surgery Mastectomy: Left; Prophylactic mastectomy: Left Hormonal Therapy
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Mar 6, 2020 09:25AM - edited Mar 15, 2020 07:18PM by alto

1) Second opinion: I didn't get a second opinion, but from what I've read and experienced, there can be some variability in diagnosis and treatment options. If you've had some scans already, your second opinion can just be having another radiologist review the scans, confirming whether they think it's DCIS, the size, the recommended treatment.

2) Lumpectomy vs. mastectomy: I think you are considering all the right things: your risk - what you can deal with now - what you want to deal with in the future - and also about where you want to end up in a year or ten years from now.

Advice from my experience -
I would ask the doctor what your potential paths might look like. I was told my options were lumpectomy or mastectomy. I picked lumpectomy.

For some people that works out, but my path ended up being: lumpectomy > re-excision > mastectomy. I'm a somewhat unique case (Paget's/42 at diagnosis), so don't go by me - but I wish I'd had a more complete picture up front. Some doctors might be reluctant to share this info, because they don't know (some things you just don't know until the surgery and pathology stage), and don't want to unnecessarily worry people, but I know my husband was irked we weren't told some things (like multiple surgeries) were a possibility.

Re-excisions appear to be somewhat common - I've read anywhere from 25-50% - so ask your doctor if they have an estimate on whether you'd need a second surgery/re-excision. It's not a big deal, but if you're taking time off work, etc. - it's good to know, be prepared, and have a plan.

I also didn't realize how high* my risk of recurrence would be after mastectomy. *[Edited to add that I recently met with my BS again and she estimated my recurrence risk as being very low; I remember my oncologist telling me a different stat, but maybe I misunderstood.] Again, an individual situation, but I think it's always good to have as much info as you can, and know what to keep a look out for going forward. Some of this (like % risk recurrence) they might not know until after surgery, when you get the grade, type, etc. I only share because it turns out mastectomy wasn't a 100% bulletproof solution, although it's a good one. (*knock on wood* doing great so far).

Because I ended up needing the mastectomy, they didn't do radiation after all. Personally, I was kind of relieved - but I don't think it's as bad in reality as it was in my head. A lot of this stuff is a pain at the time, but you get past it. My DCIS was effectively hormone negative (very low %), so I did not get Tamoxifen either.

I only had one breast removed, so I still get mammos and MRIs on the remaining one, and chest wall. This sounded like a good plan to me, so I went with it.

Everyone's path is different: you just figure out what you want (because both options are good options), go with what you know at the time, trust your gut, and keep on moving forward.

Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER. Dx 11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC) Surgery 11/10/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/18/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/15/2019 Mastectomy: Right
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Mar 6, 2020 10:33AM MinusTwo wrote:

Beesie - thanks for the HER2 update concerning DCIS. I hadn't been following the research since it's obviously no longer applicable to me. Still it's important to have the facts - and interesting to know that my treatment 9 years down the road wouldn't have changed.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014

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