Topic: Lumpectomy Lounge....let's talk!

Forum: Surgery - Before, During, and After — Surgical options and helpful tips for recovery and side effects.

Posted on: Feb 19, 2013 10:35PM - edited Feb 26, 2013 01:57AM by ToriGirl

Posted on: Feb 19, 2013 10:35PM - edited Feb 26, 2013 01:57AM by ToriGirl

ToriGirl wrote:

WELCOME TO THE LUMPECTOMY LOUNGE!

I've searched and searched BC.org and couldn't find a specific post just for those of us who have had lumpectomies (unless there was one and it got buried).  So, I thought that it was about time that we had our own place that we can come to...where we can discuss, ask questions, tell stories, seek advice, give comfort, give high fives and do the happy dance...and just feel free to let out our thoughts about the things that we have all gone through (or all currently going through, or about to go through).

Some of you have just had lumpectomies..some of you lumpectomies plus radiation, others have had lumpectomies, chemo and radiation, and still others who have had the lumpectomy, chemo, radiation and hormonal therapy.  We've all got stories...and with those stories we have questions and concerns and this is the place to put them.....so we can hear from others that have "been there, done that" and can give us a different perspective on all of it.

Let's reach as many folks as we can...I know that there are many out there that are asking, " Is this normal?  Should this be numb?  How am I supposed to sleep after surgery? When does it get better?  Do I need to call the doctor? Should this feel like this?" How is the "new normal" going to feel?  "How am I going to get through the next mammogram or MRI?"

Maybe some of you need some reassurance, maybe some of you need to know that there are others of us out there that can help...and still maybe some of you just need to scream, "My doctor didn't tell me that!"or "This sucks!" or just some nice "choice" words...  

Don't worry...we get it...we understand it...

Weather you are waiting to have your surgery, just got a lumpectomy last week or you got one years ago...share your knowledge and experiences here...

There is no limit to what we can talk about!  :)

Ready?  GO!

"Sorrow carves the opening for joy later..." Dx 6/4/2010, IDC, 1cm, Stage IIA, 1/11 nodes, ER+/PR+, HER2-
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Aug 25, 2016 11:20AM DaraB wrote:

Thanks for the lovely hat comments! I think my headache last night was from allergies. My sinuses just ached so after a couple of sudafeds, a zyrtec, and finally 2 Advil (I'm not supposed to take those but got desperate) I finally fell asleep. This morning feel much better.

Traci, My pathology also had the primary IDC and then they found DCIS in the final path. My MO said that it is very common. The biopsy can determine the primary tumor, when they remove it, they frequently find other "debris of DCIS. It makes sense because the IDC originally started out as DCIS until it invaded other tissue. It makes sense that there can be other cancer cells that are in the area, but jet haven't broken out and become invasive. That is just so awesome that your number is zero! Can't get much better than that! These tests are quite specific, especially for those in the low risk and high risk categories. It's just the intermediate scores that they aren't quite sure about. I'm glad that I had the option of an additional test aimed highly at the intermediate score results.

Sandy, hope you are feeling better now.

Poodles, don't feel badly. I just got a letter from Medicare with my summary since May 14 with a note that said that I MAY have to pay $2,300 in copays etc! I sure hope that's not the case, but I haven't paid anything with all the treatments and surgeries. I'd rather pay a little each visit if I"m going to have copays!

Off to meet a friend to get a blow torch for my jewelry. Watch out... I may be lethal with a torch!!!

Dara, Oncotype 20, Prosigna- High Risk Dx 5/18/2016, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 6/16/2016 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 8/8/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2016 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 11/8/2016 Whole breast: Breast
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Aug 25, 2016 11:26AM tsoebbin wrote:

Dara... Blow torch? Sounds fun!

I am 54 and Love Travel, My Family and Friends, and Life in General! Dx 4/4/2016, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Dx 5/11/2016, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2- Surgery 5/11/2016 Lumpectomy: Left Surgery 6/28/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right
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Aug 25, 2016 12:05PM kdtheatre wrote:

Poodles - that is so horrible! And one of my biggest fears! I keep waiting to get all the bills from my 3 different consults - as I fear insurance won't be all of them. But that is nothing compared to what you are going through!

Dara - I LOVE your new profile pic. You are so beautiful! I can only hope to look that good with no hair!!

Tsoebbin - I had a very similar lx surgery as you, with nodes and margins negative (thankfully!). For some reason my Her2 is pending on one of the masses (although before surgery they were both Her2 negative). Once that comes in - then I go for oncotype testing. I assumed I would have just one score...but you bring up a good question that I am going to email my breast surgeon about right now (she is SUPER responsive with any email question I have).

Age 49 at diagnosis. Dx 7/20/2016, IDC, Right, 1.6cm and 1.5cm (over 10cm apart from each other) Dx 7/20/2016, IDC, Right, Stage IA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 8/15/2016 Lymph node removal: Sentinel Surgery 8/15/2016 Lumpectomy: Right Chemotherapy 9/14/2016 AC + T (Taxol) Radiation Therapy 2/28/2017 Whole breast: Breast
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Aug 25, 2016 01:40PM chisandy wrote:

Dara, do you have a Medicare Part B supplement, or just straight Medicare A & B? If the former, I wouldn’t panic over that co-pay figure on your “Explanation of Benefits” section, because it’s not a bill, and the providers usually end up accepting what Medicare & your supplement carrier will pay. If you get an actual bill for that, and it gives a low figure or zero for “amount your insurance paid,” call the billing office and ask where in the Medicare billing process they are. This happened to me a couple of times when I had regular insurance pre-Medicare, and each time the provider’s office said to wait till the next billing cycle--at which point my co-pay was listed as either zero or something quite negligible.

Fever is down. Taking care of headache with coffee. Actually got a full 8 hrs of sleep--probably the Lyrica, which kept enough of the “cattle prods” at bay that I could sleep. My hand paresthesias are gone too (first time in quite a while). Chest & back muscles still stiff & sore, so I took my Arthritis Tylenol (1300 mg.) this morning. My MO’s nurse called this morning and said I should keep Tylenol under 3000 mg./day, so I should take the Tylenol only twice a day. She says I can take one of the Lyrica in early evening so long as I’m not going to drive or drink alcohol. (I deliberately planned the Zometa so that I have four uninterrupted days to do utterly nothing, so if I have to go anywhere, it’ll be on foot or via Uber, or else I’m staying put). As to the fever, if it spikes above 100.5 in between Tylenol doses, I should call her office. She says it’s definitely the Zometa and not a cold or flu. Sinus congestion, but we’re deep into hay fever season and the mold count spikes after every rain. She says I can ride this out and should be back to normal by the weekend. But at my MO followup we will discuss the next Zometa, and she will once again appeal to my Part D carrier--citing fragile veins that make IVs difficult, as well as my severe reaction--to cover Prolia instead. Fingers crossed. If we win >$30,000 in the lottery, of course, that’d cover the 3 years of Prolia out-of-pocket.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/23/2015 Lumpectomy; Lumpectomy (Right) Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Aug 25, 2016 01:45PM molly50 wrote:

No time, crazy busy at work but wanted to let you know I got sleep last night! Real, deep sleep for at least 4 hours!!!!

54 years old. Chek2 mutation. Family history of BC. Oncotype Dx 13 Extensive LVI Dx 6/8/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2-, FISHISHCISH Dx 7/29/2015, DCIS, Left, <1cm, Stage 0, Grade 2, ER+/PR+ Surgery 7/29/2015 Lumpectomy; Lumpectomy (Left); Lymph node removal Surgery 9/4/2015 Mastectomy; Mastectomy (Left); Reconstruction (Left): Tissue Expander Hormonal Therapy 10/13/2015 Arimidex (anastrozole) Radiation Therapy 10/20/2015 Whole breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/22/2016 Aromasin (exemestane) Surgery 7/22/2016 Prophylactic mastectomy; Prophylactic mastectomy (Right); Reconstruction (Right): Tissue Expander Surgery 3/21/2017 Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant
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Aug 25, 2016 01:58PM chisandy wrote:

Sleep is wonderful, Molly! Sometimes when I’m exhausted (like after coming home from an appointment after a sleepless night, a long drive or a red-eye flight to Europe or from the W. Coast) and my schedule is clear for several hours I take a nap--and it feels like I’m drinking great gulping draughts of sleep. Incredibly decadent, but satisfying.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/23/2015 Lumpectomy; Lumpectomy (Right) Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Aug 25, 2016 06:33PM ayr1016 wrote:

Hi ladies, need to stop by and ask some more questions for those of you who have BTDT

I am having whole breast/axillary/clavicle radiation. So, I guess as much as you can get done? Anything I can do to prepare my skin for it before I start radiation? They are prescribing and gave me a sample of radiaplex. Any feedback on that gel?

I asked how my scars are healing up and she said that it does not appear so far that I have a seroma, but that the bottom of breast skin looks like it has thickened trying to get back to normal. I am not sure what this means?

I will be out of town 2 days during my treatment (during week days). Does this cause problems? Anyone else ever miss a radiation day?

My 1st tattoos ever today (4 tiny dots). None of them are actually on my breast which I thought they would be. Where are yours if you got the tattoo dots?

I'm sure more questions to come. Thankful for this LX lounge :)

DX at age 41, Oncotype DX 15, Neoadjuvant Hormone Therapy: Lupron + Tamoxifen (then Arimidex) Dx 12/22/2015, IDC, Left, 2cm, Stage IIA, Grade 1, ER+/PR+, HER2- Hormonal Therapy 2/4/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/9/2016 Lumpectomy; Lumpectomy (Left); Lymph node removal Radiation Therapy 9/12/2016 Whole breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)
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Aug 25, 2016 06:34PM - edited Aug 25, 2016 06:35PM by Miles

I found out yesterday that I needed a Lumpectomy followed by Rads and Hormonal therapy. I guess Chemo is not out of the question but is being put aside unless information gathered from the Lumpectomy and the Sentinel node testing/removal. It was suggested that I check in here. I started to read some of the posts and quickly became overwhelmed by how many posts there are... So for now... I'm am mentally giving myself a pat on the back for checking. There is so much information i want to understand but just don't.

- T.m.I for my brain.... nervous... overwhelmed and trying to slow down long enough to comprehend.SickTiredSnoozeSad

“But I have promises to keep, And miles to go before I sleep,...” -Robert Frost Dx 8/19/2016, IDC, Right, 1cm, ER+/PR-, HER2-, Surgery 8/30/2016 Lumpectomy: Right; Lymph node removal: Sentinel Dx 9/7/2016, DCIS/IDC, Right, 3cm, Stage IIIB, Grade 2, 0/3 nodes, ER+/PR-, HER2-, Chemotherapy 10/18/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3/8/2017 Whole breast: Breast Hormonal Therapy 6/6/2017 Femara (letrozole)
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Aug 25, 2016 07:27PM pontiacpeggy wrote:

Ayr1016, My tats were all just below my breasts, vaguely where my bra band is, maybe a bit lower. I had one in the center and one on each side of my body. They barely show. Postponing a couple days shouldn't be a problem. I didn't do anything for my skin until about #17 treatment when I had "punctation" - little red dots that barely showed on my breast. Then I used Aquaphor.

Miles, there's nothing harder than starting out on this journey. You don't know what you don't know. I recommend you get Dr Susan Love's Breast Book. It gives you a comprehensive look at breast cancer and treatments. Tons of information. You are right, you generally don't know until after surgery if you need chemo. If you haven't had a biopsy that tells you the ER/PR and HER2 status, then you will find out from your path report. It is easy to become overwhelmed. Read Dr Love's book as well as following along here. You will find a wide range of BC experiences and treatments. And ASK QUESTIONS!! We will gladly answer each of them. We are here for you and to support you! (BTW, we'd love to know where you are located - I'm sure we have BCO gals near you).

HUGs!

Peggy. Diagnosed age 68., Oncotype 13. Everything is doable - not easy, but doable. Dx 6/5/2014, IDC, <1cm, Grade 2, 0/5 nodes, ER+/PR+, HER2- Dx 7/23/2014, DCIS, <1cm, Stage I, Grade 1 Surgery 7/23/2014 Lumpectomy; Lumpectomy (Left); Lymph node removal; Lymph node removal (Left): Sentinel Radiation Therapy 9/2/2014 Breast Hormonal Therapy 10/17/2014 Arimidex (anastrozole)
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Aug 25, 2016 08:06PM justme2016 wrote:

Hi, I was diagnosed in June 2016 with dcis. I had a lumpectomy on 7/26. My surgeon said I could do radiation, tamoxifen or watch and wait. There was no invasion in my path report and she said I was low to intermediate grade. I decided to do the oncotype test which came back today. My score was 60 with 14% risk of invasion. Apparently, that means I have a 24% chance of recurrence of either DCIS or invasive BC. Not quite sure what the 14% means. I have very dense breast tissue and am a small B cup. All my doctor when she called with the oncotype score was that I could decide my own treatment or non treatment. She doesn't really give a recommendation. I don't know what to do. I'm 52 and I have a clotting disorder so I would have to take another type of hormone blocker. Anyone with a similar story or advice? Thanks!!

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