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Topic: Just getting started

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

Posted on: Aug 3, 2020 05:18PM

LivinLife wrote:

Hi everyone! I was diagnosed about 2 weeks ago. I'm not new to cancer at all though it is new for my body. I've lost 2 siblings and a parent to lung cancer (ages 48-56), another sibling to kidney cancer (age 53) and another parent to a primary brain tumor (age 85) not to mention various cancers in both parents' families (parents and siblings) - two of my paternal aunts died of breast cancer and two others (maternal) had recurrences - one twice and the other three times, ultimately taking her in her 90's. That being said - I'm diagnosed with 2.5 cm high grade DCIS with comedonecrosis at this point. Very dense tissue so who knows what can't be seen. MRI scheduled for this Friday. Met with a local general surgeon last week and opted to go out of town to an academic-research hospital to see an actual breast surgeon and cancer team associated with a breast care clinic - appointments with the surgeon and radiation oncology next Friday (next week). I've not had genetic testing yet though have been told I will. I have a rare and serious autoimmune issue so have been told radiation is likely not an option - I'm kind of relieved about that. I'm not feeling trusting of a lumpectomy with my family history though almost believe a mastectomy is overkill if I'm not upgraded after the MRI. This recent stereotactic biopsy was the 3rd I've had in about 8 or 9 years. I was underwhelmed with the subsequent diagnostic mammograms this last 16 months prior to biopsy b/c of "here we go again" though this time it was real - other times fibroadenomas. I've done some reading on this site this last few days and it's been quite helpful. I have a lot of medical issues so am on other forums too.

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 4, 2020 12:21AM Moderators wrote:

Welcome, LivinLife! We're so sorry you find yourself here, but know that this is a safe, supportive place where you can come to connect with others, get guidance, and just be around people who know what you're going through. Please let us know if we can be of any assistance!

The Mods

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Aug 11, 2020 06:04PM LivinLife wrote:

I had the breast MRI last Friday. To date no-one has contacted me about the results. I had an appointment with my neurologist today. Things are fairly stable with neuro kinds of things so we talked about my recent DCIS diagnosis. He was kind enough to pull up the results of the MRI and we talked about them a bit. I did have these, thankfully, forwarded to my new breast surgeon so the local docs listed to get copies are likely just waiting for me to talk with her.... she was not the referring doc however... Anyways, the MRI showed the area is 4.8cmx2.8cmx1.8 cm vs. 3x2.5x1 shown on the diagnostic mammogram in early July. Is this due in part to the MRI being more accurate, actual growth or I'm thinking maybe both? It also mentions "non-mass enhancement leading to concerns of mammographically occult noncalcified DCIS. Additionally, primarily plateau and persistent kinetics.....

Also, how important is "mild background parenchymal enhancement" which showed up with both breasts? I've had two biopsies in my right breast before and there is a 6 mm area I've been unaware of which is "stable" from 2017 annual mammograms - different area where a fibroadenoma was found some years ago.

They recommended another stereotactic biopsy if I plan on breast conservation.... NOT - I think this seals the deal for MX which then means BMX given I'm fairly large, etc. I would not plan on reconstruction either. I have enough concerns about healing from BMX without adding to that anyways. I am scheduled to graduate the wound clinic tomorrow (hands and feet ongoing) - other areas heal "OK" though take a little longer now. 5, 10+ years down the road I expect other areas to be a bigger issue....

Beesie???? Any help you can offer with the above please??? Anyone else willing to weigh in? Thanks so much you all. I don't know what I would've done without you and this site!


Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 11, 2020 08:58PM barbaraprevost4 wrote:

Dear LivinLife,

I am so sorry you are going through this. I have DCIS and LCIS and I am scheduled for a mastectomy this week. All this is new for me. I learned a lot here. I also feel that I am not alone. I am sure someonelse will answer you soon. In the mean time my thoughts and prayers will go out to you.

Barb

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Aug 11, 2020 10:13PM Beesie wrote:

LL, unfortunately there is not much I can help you with but here goes:

"Anyways, the MRI showed the area is 4.8cmx2.8cmx1.8 cm vs. 3x2.5x1 shown on the diagnostic mammogram in early July. Is this due in part to the MRI being more accurate, actual growth or I'm thinking maybe both?"

The MRI might be more accurate, or it might be showing surrounding tissue with benign fibrocystic conditions rather than more DCIS - it's impossible to know until you have the surgery. When I had an MRI prior to surgery, it showed that my breast was full of "stuff" - that was actually the word my surgeon used because he said he didn't know if it was more DCIS or something benign. Mine turned out to be more DCIS (and I also had pretty much every benign fibrocystic condition listed in pathology books) but I've seen other situations where the MRI has over-estimated the size of the DCIS. What is unlikely is that this is growth. DCIS just doesn't grow so quickly that a change large enough to be noticeable on imaging would occur over 5 weeks. Possibly not even over 5 months.

"mild background parenchymal enhancement" To my (very limited) understanding, this simply represents normal breast tissue, with the enhancement driven by hormone levels. Moderate or marked levels of BPE (yours is mild) might however indicate an increased risk to develop breast cancer. See here: https://www.researchgate.net/publication/332541751_Background_parenchymal_enhancement_on_breast_MRI_A_comprehensive_review "The degree of normal fibroglandular tissue that enhances on breast MRI, known as background parenchymal enhancement (BPE), was initially described as an incidental finding that could affect interpretation performance. While BPE is now established to be a physiologic phenomenon that is affected by both endogenous and exogenous hormone levels, evidence supporting the notion that BPE frequently masks breast cancers is limited. However, compelling data have emerged to suggest BPE is an independent marker of breast cancer risk and breast cancer treatment outcomes. Specifically, multiple studies have shown that elevated BPE levels, measured qualitatively or quantitatively, are associated with a greater risk of developing breast cancer."

That's all I can say - I'm way out of my league on anything else.




“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 04:33AM Rah2464 wrote:

LivinLife I will echo a little of what Beesie has said. Sometimes the MRI indicates a larger area of concern than your actual tumor size upon removal. That was the case for me. I did, however, have IDC hiding within the DCIS. That is something that can only be determined upon physical examination of the excised tissue. I also had dense breast tissue that hid things and opted for a double mastectomy because imaging was not effective for me. So very sorry you are having to deal with this on top of a serious autoimmune condition.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 12, 2020 04:49AM LivinLife wrote:

Thanks so much barbaraprev! I wish you well with your surgery this week! Please check in and let us know how things went and how you are feeling when you are up to it. I so agree with you on how helpful people are on this site, wonderful and helpful information, as well as not feeling alone. There are many things where I don't think people have to be going through the same or similar thing to help others. I believe this is a life event where others going through it are the best help even though we each have differences in our journeys... Best to you with your surgery!

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 12, 2020 04:59AM LivinLife wrote:

Thanks so much for responding Beesie and for your thoughtful reply as well. Interesting... my neurologist said something about the possibility of inflammation, fluid, mucin, etc. as a possibility for some of that "larger" area. I wasn't quite sure what he was saying at the time. Reading your response helped and helped me make sense of what he was saying too. That is also the area the radiologist suggested biopsy for which as I said won't happen. To your point about DCIS not growing that fast. That makes sense! From March 2019 through October 2019 the area "only grew" 7 mm.

I see Radiation Oncology this morning (local). Even though I've made up my mind about BMX it still seems to make sense to meet with them vs. cancel. Unless they have some very special things to think about I would then cancel my Radiation Oncology appointment in Cleveland Clinic (telemed) next week - just wouldn't make any sense. I meet the Cleveland breast surgeon via telemed on Friday and we just need to get things moving at this point.... My biopsy was July 15th! I initially slowed things down though appointments have slowed things down even more beyond what's necessary at this point. The breast surgeon's nurse also told me we can't wait much longer. I do meet with Cleveland Genetics (telemed) tomorrow in the middle of my work day... : ( I also have Cleveland telemed set up with Medical Oncology for next week which I will keep. I am not open to an AI though if anything invasive comes back an MO will be an important team member. Thanks so much for your input again!!!

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 12, 2020 05:07AM LivinLife wrote:

Thanks Rah2464! I will be very surprised if I don't have IDC lurking - or microinvasion - even while "stuff" as Beesie said may also present in the mix. Obviously would be great if that is not the case though just won't be surprised. As I get closer to surgery and certainly soon after I would appreciate any insights you can offer from your earlier recovery days. One of my best friends will come in from WI (quite a drive) for 2 weeks. That will be a godsend!!! She will be more help with practical things really - we both know that about each other : ) Thankfully a new co-worker will take me to Cleveland for surgery and my friend will drive me back home and then back later for my follow-up as she heads back to WI - I'll arrange for a ride back to central PA- likely another co-worker. Cleveland is just over 4 hours from here though I was born and raised in the area with one sister left there and then extended family. Anyways.... the morning is getting away from me now so I will close off for now....

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 12, 2020 06:18AM barbaraprevost4 wrote:

Thank you LivinLife !

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Aug 13, 2020 05:03PM LivinLife wrote:

I saw local RO yesterday. They knew before I got there I likely would not have radiation due to scleroderma. They ran me through the 2 hour appointment anyways, which was fine. they were all very nice and helpful in different ways. I met with the actual RO doc the last 45 minutes or so. He provided a lot of good information. He also was more candid with me than he typically is with most patients. He was quite honest really about radiation oncology being a business and yet he wants to provide me with accurate info., etc. he said he did not want to go against my CC rheumatologist's wishes radiation be avoided. He also said the "standard patient" has 5% impact on heart and lungs and some of this can occur years later. I hear others' RO and MO deny these kinds of things and leave people feeling so invalidated with heads spinning. He said I am not the standard patient, etc. He recommended mastectomy, even brought up BMX, reconstruction, and went on and on. I thanked him profusely for his honesty and all the time he took. I think and hope he would be as honest and take as much time if someone like me were considering radiation and uncertain. So I canceled Cleveland Clinic RO (telemed) next week. I already knew where I was, it's reinforced even more and I don't want to be wasteful of an appointment slot someone else could really use.... Telemed appointment with CC breast surgeon tomorrow..... The breast MRI finally arrived to them today - they were unhappy the local hospital did not overnight it. I had faxed a report and the CD was on it's way so.....

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 13, 2020 08:29PM Beesie wrote:

Sounds like you had a really good appointment with the RO that confirmed your decision to have a BMX.

I'll be interested to hear what the breast surgeon says tomorrow about your MRI findings.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 14, 2020 04:35AM Rah2464 wrote:

LivinLife glad you feel comfortable with your decisions. It always is helpful to have your instinctive reaction confirmed by a knowledgeable physician (your RO in this case). As for initial recovery after the BMX, I had direct to implant not sure if that is the path you are taking or if you are going about it in stages. Regardless, it is a major surgery and you will not be able to lift things for quite a while. I would definitely request that your BS or PS provide you with a physical therapy referral after surgery when appropriate. I lived in my mumu that snaps up the front you want clothing that is easy to get in and out of. Nothing where you pull it over your head. I also had an old sweatshirt hoodie that zipped up the front. I cut the arms about halfway so easy to get in and out of , things like that. Wish you the best success on your surgery.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 14, 2020 05:44AM LivinLife wrote:

Yes on really good appointment! I will definitely check-in later in the day/eve. with an update on today's BS appointment. Thanks!

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 14, 2020 06:05AM LivinLife wrote:

Thanks for responding Rah2464! I won't have an implant especially given all I've read on the scleroderma boards well prior to the DCIS diagnosis. Given similar concerns and my healing issues (frequent flyer at the local wound clinic the last 2 years - autoimmune related) I won't consider reconstruction of any kind. I was clear on that before this diagnosis. that seems odd I even thought about it though just reading many posts by women with scleroderma about implants especially at various points just helped me come to that decision, indirectly I suppose, 2-3 years ago. I also watch too much "Mystery Diagnosis" and "Monsters Inside Me." LOL though I do love those shows.... LOL

Thanks for the tip on P.T. referral and button-up's. I think it is this site that has that long list of helpful post-mastectomy tips. I will look for that again over the weekend - I looked at it recently. Honestly, my biggest concerns at this point are when I can drive and when I can resume even some work. I have a ride to and from Cleveland for the surgery and even to the follow up. My options for a ride back from follow-up are concerning me more - people just aren't social distancing who have made offers and I'm really uncomfortable.

Additionally I am doing telehealth (I work half-time) as a psychologist from home due to COVID. I'm in with a very small group though we are all self-employed. the vast majority of my clients will be all right for 2 or so week without me though I also know things will pop up. I also know they would prefer not to go 2+ weeks without touching base. Given my healthcare expenses, only working half-time and self-employment I also really can't afford to be completely off work all that time or longer. I'm doing "phone only" (so don't have to worry about appearances right after surgery lol). I don't know how comfortable I'd be a week after surgery holding a small cell phone (I don't have or want a Smart Phone) and ethically being able to work with someone if even for 30 vs. 53-55 minutes... and maybe taking a 1/2 hour break between clients and only talking with a few clients a day that second week. I was concerned too when I saw "everythingw" say she had trouble talking for a minute or so soon after surgery. I'm hoping that is better for her now...? I guess I can talk with the BS about these things today as well.

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 14, 2020 05:27PM LivinLife wrote:

I met with the BS today. It went very well - As you all would expect we ran through health history, family history esp of cancer which is lots, meds, scleroderma and radiation not an option, etc. she was clear a 58 year old woman cannot have a lumpectomy and no radiation so mastectomy is the only option. We talked about "homework" I had done and I'm actually wanting BMX due to not wanting reconstructive surgery and being large. She didn't blink - it was settled. the hardest part of the appointment was the 45 minute wait of her being behind and technology glitches to actually connect with each other - that was the hardest part. I am soooo thankful she actually sets up an in person appointment for the nurses to go over drain care, including how to shower with the drains. I'll meet with (hopefully the same day) anesthesiology, get genetic and other blood work and meet with Dr. Radford for an actual physical exam. If scheduling all works for Aug. 28 appointments, surgery would be Monday the 31st. I picked up some button shirts and jammies after the appointment and a hook and zip compression/athletic bra. It was soooo weird b/c I could only go by it fitting around my ribs. I won't have my boobs then and it was the weirdest thing to think about fit. I found the same with the shirts - I picked up shirts I would've never worn before b/c I'm too big - it's kind of fun now!!! Anyways, it's been a long day so signing off for tonight. Such relief (for now anyways lol)....

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 14, 2020 06:06PM MinusTwo wrote:

LivinLife - here's a good thread to prep for surgery. Wishing you the best.

https://community.breastcancer.org/forum/91/topics...


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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Aug 15, 2020 06:11AM LivinLife wrote:

Very helpful MinusTwo! Thanks so much. I also found the other list so between the 2.....

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 19, 2020 02:13PM LivinLife wrote:

I just had a telemed visit with my hematologist/oncologist. She was absolutely awesome with really good energy and quite personable! We talked about basically the drawbacks of Tamoxifen/AI's, esp. since I have erythromelalgia and already at higher risk for blood clots and am only 2% estrogen positive - or I think she may have been open to it. Obviously the fact I'm going BMX was a large factor too. She did not mention an actual med though said she is considering something else - I had the impression IF there is no invasive cancer or everything changes. My hematocrit and hemoglobin have been on the rise too - no other doc seems concerned though I know that relates back to the erythromelalgia so asked her about it since she is also a hematologist. She is ordering another genetic test based on this - she acknowledged it makes sense - THANK YOU! She will be great to work with though obviously I'm hoping our work is short-term which means better prognosis for me.

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 20, 2020 08:46PM LizLynne wrote:

Livinlife,

I was diagnosed with DCIS on my right breast on Oct 1 2018 (ironic to find out on the first day of BC Awareness month?). I had a lumpectomy, re-excision (where they found a microinvasion IDC), SNB, followed by whole breast radiation (in Feb 2019) and then started on Aromatase. Here it is less than 2 years later and it's back, same side...based on the biopsy and MRI, it's DCIS in two places, one near the previous surgical site and another in a different area. Getting ready for a BMX and reconstruction, probably late Sept. Not sure yet if DIEP flap or implants. Good luck with your surgery, hope you heal quickly - keep us posted!

Dx 10/1/2018, DCIS/IDC, Right, 3cm, Stage IA, Grade 2, 0/3 nodes Surgery 10/25/2018 Lumpectomy: Right Radiation Therapy 2/1/2019 Whole-breast: Breast Hormonal Therapy 3/1/2019 Arimidex (anastrozole) Dx 8/10/2020, DCIS, Right, <1cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2020 Mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Aug 21, 2020 05:58AM LivinLife wrote:

LizLynne it just does not cease to amaze me to continue hearing stories like yours... Sorry you have to go through all this again and in a more major way! Thanks so much for well wishes! I wish you the best as well! You have a little ways to wait yet though that is how these things go...

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 21, 2020 03:34PM LivinLife wrote:

I know breast cancer (early, DCIS, etc.) is not really supposed to be painful. I've had an burning ache in the area of my DCIS for some time now. It's not constant though quite noticeable and uncomfortable when it happens. Anyone else experience something like this?

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 23, 2020 11:58AM barbaraprevost4 wrote:

Hi LivinLife,

I had two lumpectomies for DCIS one in May and June this year. I had a mastectomy 10 days ago, I am waitting for my results. I have that burning sensation/pain in my left side ( the side of the DCIS) started before the first lumpectomy and I told the surgeon. She said that it is not related to DCIS. I told my family doctor and she ordered a chest x ray before the mastectomy. She did not call me back, they only call back if there is abnormal results. I still have the pain and I know we can have psychosomatic pains but this one started before I was diagnosed with DCIS.

Bar

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Aug 23, 2020 12:05PM barbaraprevost4 wrote:

I forgot to mention the pain/burning sensation is not in the breast area, is below my breast going down to my left rib.

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Aug 23, 2020 02:35PM LivinLife wrote:

Thanks for replying barbaraprevost4! Sounds like our experiences may be a little different given location. I've had various painful sensations in both breasts over the years and know that is not uncommon and not abnormal either. I think this one is a new sensation? Maybe psychosomatic as you said or related to neuropathy which I'm also diagnosed with though usually that impacts my feet the most. Prior to diagnosis though I had shooting burning pains in my left breast so who knows.... it will be interesting to see if it remains after surgery. that could still mean psychosomatic though vs. it just stopped my DCIS and breast are gone....

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 23, 2020 09:22PM everythingwillbefine wrote:

living,

I had that kind of pain in my breast where I had DCIS, same as what you described. I googled it and Dr. google told me at that time was pain is not a sign of cancer so I didn’t bother to ask my OB.

Now I know Dr. google is not trustworthy.


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 24, 2020 06:01AM LivinLife wrote:

Thanks for replying everythingw! Good to hear from you! I guess what really made me wonder about the pain being breast cancer-related is I know I have dying cells in there (comedo-necrosis) - I kind of find that a little funny now...I guess it's all so small I would not really feel that at this point though it made sense to me for a few minutes at different points. I suppose if the dying cell area was really large it would make more sense though it will not get to that point.... I'll make a note to ask my BS anyways since I'll be seeing her in person Friday... I don't have many questions at this point so might as well ask....

I hope you are doing all right in your recovery and pressure is improving... Hopefully you're feeling better overall even if still a ways to go...

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 28, 2020 03:13PM LivinLife wrote:

I had all my pre-op today, including genetic testing + and met my BS in person. Last time was telemed. I think we will work well together. She is very straightforward, thorough, kind, takes plenty of time and does not seemed rushed - that's huge! Her nurse spoke highly of her, including saying she is meticulous - glad I made the change from central PA. The BS said what I kind of thought - she expects to find invasion... I could have gone either way and still could though kind of expect to find invasion vs. remaining in situ. I was really comfortable with everyone I met with today which is a good feeling.

Hope your surgery went well today Colleen!

I report at 6:00 a.m. Monday morning. Sentinel node injections at 7:00 a.m. She will keep me overnight...

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Aug 28, 2020 05:21PM barbaraprevost4 wrote:

Good luck LivinLife, I wish you the best for your surgery !

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Aug 28, 2020 05:36PM LivinLife wrote:

Thanks so much barbaraprev!

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 1, 2020 07:54PM LivinLife wrote:

Surgery went much longer Monday, about 5 1/2 hours all total, though all went well. No cancer in the sentinel nodes which is an obvious relief. I had lot of pain medication prior to moving up to my room around 4:30 or so yesterday. I then only took Acetaminophen at 8 p.m. last night. I was discharged this morning and took 1,000 mg for the 4 hour trip. The BS gave me Tramadol upon leaving the hospital b/c I did not want Vicodin or anything with Codeine in it. I did quite well during travel today which really surprised me. I wasn't driving of course. Just took a couple Ibuprofen 1/2 hour ago. My pain has been minimal and fleeting when the big zings happen. I will take a pain med before bed tonight b/c I only got 1 1/2 hours of sleep last night due to having the roommate from hell. She refused to use her call light so would yell many times throughout the night for staff and about 3 a.m. this morning began beating things. She would say she couldn't find her call button and the nurses kept telling her it was right beside her. She seemed to benefit from all of that. I just need to sleep well tonight!

The nursing staff last night, as well as the BS and her resident this morning, could not believe how well I was doing. There is a high pain tolerance in the family. I also think some of what they did helped. The discomfort of the drains I kept hearing about is not an issue at all for me - I think it's how they have them secured. yes, they are a pain to drag around though that is different. BS also mentioned a negative pressure wound vac as something that just occurred to her when we met Friday. She contacted the rep between then and my surgery Monday and the rep helped put that in place during the surgery. So I not only have the 4 grenade sized drains though also this large gray box for the next week. I do not understand how this works (there is no fluid for it to collect it is strictly to keep things clean and prevent infection) though I just think it may be helping with other things? I hope to get two of the drains removed next Tuesday when I go for follow-up.

So pain management-wise since I was doing so well last night and until I left today the nurse told me to take the Acetaminophen every three hours and Ibuprofen three hours later and just keep alternating like that going forward. Obviously if I want to take a pain pill I can though may just reserve those for sleep if needed. Don't get me wrong I can feel soreness and the occasional zings though really low level overall.... it's amazing though I've heard many other people's similar stories.

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right

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