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Topic: Single mastectomy vs. lumpectomy? Your recovery experience?

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

Posted on: Jul 27, 2020 03:52PM

renbird wrote:

Hello out there!

This is my first post. I'm a 48 year old woman, just diagnosed July 9th, 2020 with Stage One, Level A, Invasive Ductile Carcinoma (Stage 0), hormone+. I am in the process of deciding whether to have a single mastectomy or a lumpectomy with 4 weeks of radiation.

My breasts are tiny and dense (barely an A cup). Perhaps for this reason my biopsy was very uncomfortable and took over a week to recover from. Ouch! They warned me about this as I have "almost no fat" in my breasts. My lump is 1.3cm, but a lumpectomy would take a golf-ball sized piece of my breast–– that's a lot for me.

Question for ladies who had: Single mastectomy (without reconstruction), sentinel nodes removed:

1. How long did it take you to recover from single breast mastectomy- without reconstruction? How did you feel 2 weeks out? One month out? Two months? What was the recovery process like? How soon could you drive?

2. Also, how long did stiffness? numbness? pain? last? after your mastectomy?

3. How long dis your drains have to stay in?

Question for ladies who had: Lumpectomy with Radiation, sentinel nodes removed:

1. How long did it take you to recover? How did you feel 2 weeks out? One month out? Two months? What was the recovery process like? How soon could you drive?

2. Also, any did stiffness? numbness? pain? last? after your lumpectomy?

3. How long dis your drains have to stay in?

4. What was your experience with radiation like?

Thank you so much for any insight you may have. I've seen two doctors and both have VERY different opinions.

-Renbird

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Jul 27, 2020 05:08PM Beesie wrote:

Renbird, you are asking about the recovery process, which is something that will affect you for a few weeks or maybe a few months. Living with your choice of surgery will affect you for the rest of your life.

How will you feel about living with one side being flat if you have the MX?
How will you feel about your risk level and future screenings if you have the lumpectomy?

Take a look at this thread in the surgery forum:

Topic: Considerations: Lumpectomy w/Rads vs. UMX vs. BMX https://community.breastcancer.org/forum/91/topics...

.

As for your questions about the recovery process, what's important to understand is that there is a very wide range of experiences so you really can't assume that what happened to someone else will be the same for you. I had a UMX (a unilateral/single mastectomy) and I was out taking long walks within 48 hours. That's the experience for many people but there are many others who feel exhausted for weeks - the surgery and anaesthesia affect each of us differently. Numbness? My arm from my elbow up was numb for 6 months (that's thanks to the sentinel node biopsy). Some people recover much sooner than that, others take longer. Chest numbness? Some women regain a quite a bit of surface skin sensation while others remain numb for life. Similarly, with a lumpectomy and rads, you will find some people who breezed through rads and others who had terrible burns and great difficulty.

My suggestion is that rather than depend on the few people who answer here, you should read, read and read - this board is filled with posts from people sharing their experiences. Read the Surgery forum. Read the Radiation forum. Read the Living Without Reconstruction After A Mastectomy forum. Your decision is not an easy one, but there is lots of information on this site to help you.

Good luck with your decision.



“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 27, 2020 05:41PM - edited Jul 27, 2020 06:08PM by alto

What's important to you? I know some people who really want to hang onto their breasts, or their nipples. I know some women who have always been annoyed by their breasts and are fine to get rid of them. I know some people who just want to be done fast, and take the route they think will get them there. Or they feel 'safer' one way or another. Then, people have financial, commuting, and family concerns that impact decisions, too.

Will you plan to wear a prosthetic, or a shaper, afterward? Or will a t-shirt bra with a bit of shape/padding do it?

I think either way you choose, you can have a good outcome and recovery.

---

I had a large lumpectomy/quadrantectomy first. The first four days I was pretty much resting. I was a little more tired than usual for about a week after that (I was working, but not doing much else). I just had to be a little more careful when driving - turns were uncomfortable that first week back. I do remember the breast being kind of achey while I had it.

I didn't get to do radiation because they didn't get clear margins, even after a second surgery, and I ended up needing a mastectomy. Sentinel node came out with the second surgery. It felt okay at first, then like a golfball under my arm around day 7, then that sensation went away about 4 days later.

My mastectomy wasn't too bad. Had one drain, out in 7-10 days or something like that (everyone's different on this). I took it easy for a week (the first 4-5 days were the worst for me in terms of aches and fatigue, and getting the body back on track after the opiods). At about week 2.5 I was able to run short errands (a few days after drains were taken out). I kept feeling a little better every week, and by the third week I was turning the corner and feeling more like myself - by week 4 (pre-corona), back to work.

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 11/11/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/16/2019 Mastectomy: Right
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Jul 27, 2020 08:22PM FindingOptimism wrote:

I have about the shape you describe (small and firm) and about the same tumor size. I opted for lumpectomy and radiation. Not sure but I think the lump removed was substantially smaller than golf ball size. My recovery was trivial. No drains. Light walking the following day. Driving within a day or two. Actually went to an all day meeting within a week and was fine.

some stiffness but I worked hard on the stretching. I had few problems with radiation. My major problem arose after I started tamoxifen and experienced some radiation recall. This led me to some PT which worked out the residual stiffness and loss of mobility. Overall, for me, the surgery and radiation were fine and the tamoxifen has been a series of skirmishes but rarely a full out war.


Two years later there is still asmall pucker in the breast and the radiation tattoos (which I hate). Since I don’t have a career in nude modeling it’s all good.



Dx 8/2018, IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- (IHC) Hormonal Therapy 12/13/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy; Lymph node removal: Sentinel Radiation Therapy Whole-breast: Breast
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Jul 28, 2020 09:09AM renbird wrote:

Hello, all-

Thank you so much for your sharing your stories, your thoughtfulness, and advice. I want to hear from as many people as possible so I can make the best decision possible (like everyone else!) and your input really helps.

Thank you! -Renbird

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Jul 28, 2020 09:27AM renbird wrote:

Thank you, Beesie!

Well put... I will check out the other thread you mentioned. Thank you! -Ren

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Jul 28, 2020 11:08AM bcincolorado wrote:

Hello,

Sorry you are here and making these decisions are not easy. I was about your age when diagnosed and was ER+/PR+/Her2nu - or what my breast surgeon called "nice cancer" (ha!).

We tried lumpectomy since they felt was small. I did it on a Friday and was back at work on Monday.

After no clean margins did re-excision (but waited a month or more because of family obligations for a wedding and scheduling surgery. Then did the re-excision in November. Did again on a Friday and back on Monday and not too bad recovery.

After STILL no lean margins she said it had to go at that point they had taken out a lot and the tumor was much larger because my tissue was so dense.

Then we decided since it was the Christmas holidays to wait until first part of January for the mastectomy's. So there it went.

With the mastectomy I did not do radiation since they said I did not need to. They were able to do skin sparing nipple sparing and I did immediate implant for the reconstruction after the mastectomy's.

I had the option to have my "other side reduced and lifted to match" if I wanted to do so but I wanted one side to be "me" all the way and chose not to do so and am glad I did.

Am I lop-sided? Yes. Do I care at this point in time? NO!!!

I did have a new oncologist after mine retired who asked me why I had no radiation done though and I told her I had no idea but they told me I did not need it but sounds like she might have wanted it done. You may want to double check with your MO before you make your final decisions for you.

All your labs and pathology play a part in your treatment I know and they all usually coordinate with each other fairly well. The decision is yours though.





Dx 8/2009, IDC, Left, 5cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 1/6/2010 Lumpectomy: Left; Lymph node removal: Left Hormonal Therapy 1/14/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/29/2016 Femara (letrozole)
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Jul 28, 2020 03:29PM ctmbsikia wrote:

So sorry you have to go thru this. Ultimately it is your choice. Like alto said, some women just want them off and possibly be able to skip radiation, others would like to keep their breast/nipples. I am on the larger size (38B) it was the end of NFL season and my team was in the playoffs and doing well (later went on the win the super bowl)--so while I was distracted, I knew I wanted that tumor out in the least invasive way possible, which was a lumpectomy. I had no time and just skipped right over the plastic surgeon. For me, I went with 1st instinct which was get it out, least amount of invasion, and least amount of recovery time. Plus, no overnight hospital stay.-and no drains! That's just me though.

Best wishes with your decision.

Fast recovery, I did get a breast seroma 3 weeks post op but didn't need it drained and it didn't affect getting radiation. Whatever you do wear tight bra or the compression garment they give you, and leave it on!!! I was not wearing proper support which is why I got the seroma. Tumor was on the larger end of the scale, so I do see indentations in certain positions like leaning over or lifting my arm over my head. Also have dead tissue (fat necrosis) in there. It doesn't really hurt, but can feel pulls and twinges of pain now and then. Post surgical changes they call them. Hopefully I'm done with anymore changes. Should anything else come up in the future, I will remove both. I will be done with them if that happens.

Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/30/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/10/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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Jul 28, 2020 05:15PM cake8icing wrote:

Hi Renbird: I am sorry you have joined our club. It’s not a club any of us wanted to be in, but I for one am grateful for all the support here.

As Bessie said, every woman’s decision is individual, and what works for one could be wrong for another. That said, here are some thoughts on my decision. My diagnosis was DCIS (stage 0), fairly large expanse of calcification that would require a fairly large excision on my barely A breast if I chose lumpectomy. I had just lost my job when I was diagnosed, was in the middle of job hunting, and really wanted to get the most efficient treatment for me. In addition, with it being my left breast, I was worried about any possible negative effects of radiation on my heart, if I had a lumpectomy and radiation. (I have a slight heart issue as it is and although they take steps to protect your heart during rads, no one can guarantee that your heart will not get some negative effect from the radiation). So I decided on a mastectomy, and then decided no reconstruction because of the 6 women I spoke to personally about their reconstruction experiences, 3 of them had infections or other adverse outcomes with their reconstruction. I decided that hey, I stuffed my bra when I was in high school, what would be the big deal to stuff my bra now, except now I would have a really nice prosthetic instead of Kleenex. (As you can see, I have an irreverent approach. That’s just me). Think about all the information you gather here, try and close your eyes and picture your future self through each possible pathway. If you make your decision based on your true feelings, you’ll make the right decision for you. Good luck!
Dx 2/14/2020, DCIS, Left, 3cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 3/20/2020 Lymph node removal: Sentinel; Mastectomy: Left
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Jul 28, 2020 05:42PM - edited Jul 29, 2020 03:43AM by TaraLeeOm

Hi, all, I had my DCIS treated two years ago and would like to share my thoughts.

When I was first diagnosed, I did a lot of research on DCIS and felt strongly that it is being overtreated. However, did I want to take a chance? Of course not.

Since my DCIS involved my nipple, which had to be removed whether I chose lumpectomy or mastectomy, I chose mastectomy. Also, as a benefit, I needed NO hormone pills or radiation by going that route. When my doctor first presented me with my options, I was horrified at the word "mastectomy". Like many, I felt that was a drastic option and a road I did not want to go down. The doctor even presented double mastectomy as an option, and the benefits for going that route. I thought she was out of her mind. A double mastectomy as an option for something that odds are would never turn to cancer? So naturally I sought a second opinion. It was confirmed the nipple would have to go, along with 1/3 of my breast. At that point, a mastectomy didn't sound so much worse. So I went along with mastectomy with breast reconstruction.

However, while waiting the required months with the tissue expander, I found I just did not like the psychological feeling of a foreign object in my body. I informed my doctor I wanted the expander removed and no reconstruction. But now I am faced with always having to wear my fake boob, so as not to throw my spine out of whack due to more weight on one side. It's not the end of the world, but I wonder if the double mastectomy would have been so bad after all. I lost one, what difference does it make? As of now, I have to get a mammography for the whole breast and see a breast surgeon for the mastectomized breast to be sure of no new growths. That's another thing I was not aware of -- you need to see a breast surgeon for preventive checkups with a mastectomy.

Anyway, sometimes I feel I should have just gotten the double M, as drastic as that sounds. As anyone who has gone through this will agree, I'm sure, it takes going through the whole experience before you can really decide what would have been best for you and what would have made you most comfortable.


To answer your specific questions:

Question for ladies who had: Single mastectomy (without reconstruction), sentinel nodes removed:

1. How long did it take you to recover from single breast mastectomy- without reconstruction? How did you feel 2 weeks out? One month out? Two months? What was the recovery process like? How soon could you drive?

I may be unique here, but the morning after my mastectomy I felt fine. NO pain (I was on meds of course). I remember asking my doctor why am I not in any pain? He said he makes sure they give patients enough pain meds before any pain starts in order to stay ahead of the pain.

2. Also, how long did stiffness? numbness? pain? last? after your mastectomy?

I stopped taking the pain meds after 4-5 days. I have no recollection of ever being bothered by uncomfortableness. Again, this is me....I also had no issues or bruising with the biopsy.

3. How long dis your drains have to stay in?

I remember having to measure the discharge during the day, and when it consistently stayed below a certain amount, it was ready to come out. I think mine was in for 1-2 weeks, but I also remember it was removed too early, because when they “inflated” the expander, I experienced a lot of leaking, and they had to drain me for about an hour. I also remember feeling a bit of pressure before that and it getting more annoying by the day. But after that forced draining, I felt total relief andthere were no more issues.


Dx 3/15/2018, DCIS, Left, <1cm, Stage 0, Grade 2, ER+ Surgery 5/22/2018 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement Dx 5/29/2018, DCIS, Left, <1cm, Stage 0, 0/3 nodes, ER+/PR+
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Jul 28, 2020 06:41PM kksmom3 wrote:

Hi! I'm in the itty bitty titty club as well. Lucky me, not really, I have always been an A on the left and more like an AA on the right, It was my smaller R breast that was affected. I didn't have a lot of DCIS, they thought maybe 6 mm, but they found a 3mm bit of IDC in the tissue upon pathology. Like you, tiny breasts, I did go ahead and do a lumpectomy. My cancer area was a cm below the nipple, so the surgeon did a half circle along the edge of the areola to get in there for surgery. I also did radiation. I had very clear margins, 4 mm from the DCIS and 7 mm from the IDC, and they took out a 5cm by 3 cm chunk. I honestly can barely tell, I didn't lose enough tissue to make a visible noticeable difference. It depends on where the cancer is located though, I would think. I thought upon hearing "golf ball size" when I woke up, that I would have nothing left, but somehow, I still have about what I had before. They did not tell me how much would have to go beforehand, and I didn't think to ask. I knew it wasn't a huge area. The Dr's nurse told me "golf ball' was pretty standard. Wish they'd have told me that, I was shocked when I woke up and heard that, but more important, very happy that my sentinel node was clean. I also got red at the end of 20 rad treatments, but did ok. I think most women do ok.

So, anyway, it's a very personal choice but when I asked if I should have a mastectomy, the well-respected, highly trained surgeon was horrified and said very emphatically that I did not need a mastectomy. So, I trusted him and my gut and went with it. I really didn't want to lose my breast, I was 61 at the time, but I just didn't want to. So, I didn't. I just have to hope and pray that was the right decision, but I feel now like it was. I am nearly 2 years out. Best of luck.

Dx 8/8/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 10/1/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Jul 29, 2020 09:48PM renbird wrote:

Hi kksmom3 (and all you wonderful ladies out there)-

Thanks so much for your response, it was helpful and made me giggle a bit too! : )

I'm surprised (and so glad!) that your lumpectomy left you with more or less the same breast you had before surgery. My lump is way off to the side, by my ribs. (Flashback to: The endless mammogram photos pulling pulling pulling my "meager meat" into the compression vice was a bit much! Not to mention the biopsy that took a WEEK to heal from. They warned me that we tiny tangerine ladies feel more pain with this stuff but WOW! I did not expect that. Did you experience any of that in your early days?)

Anyhoo- I really don't think I want reconstructive surgery of any kind (more surgeries? more worries at checkups? more doctors visits? during Covid? Yikes!) so I was leaning mastectomy, but... I too met with a surgeon (for a second opinion) and she definitely tried to steer me clear of a mastectomy. It was kind of intense. She kept looking at me with this deep intense stare (horrified, like your surgeon) saying "It's NOT the standard of care anymore... think of the long term..." "It's a MAJOR surgery..."

I left very confused as I was kind of "all set" to have a mastectomy until I saw her. Now I am going for a 3rd opinion and seeing a cosmetic surgeon to try and sort my thinking. Happy to hear any further thoughts, if you have any. : ) -Renbird


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Jul 29, 2020 09:56PM renbird wrote:

Thanks for sharing your journey with me... TaraLeeOm! I hear you on not wanting something "foreign" placed in your body. Crazy that you felt almost no pain after your mastectomy. I'm so glad! : ) I keep hearing how dreadful and scary and "life changing" a mastectomy can be. I know every woman's reaction is different. For me, I feel like my breasts are so small, but the time they remove the "golf ball" size of tissue, I will be left with a teeny malformed breast, and then will have radiation, and then will have to worry about it coming back (I have significant DCIS in one breast, and none in the other.)

The last things you wrote really hit home:

"...As of now, I have to get a mammography for the whole breast and see a breast surgeon for the mastectomized breast to be sure of no new growths. That's another thing I was not aware of -- you need to see a breast surgeon for preventive checkups with a mastectomy." (I did not know this either! What does the surgeon do at these checkups? They can't do a mammo on the MX breast, is it ultrasound?)

"Anyway, sometimes I feel I should have just gotten the double M, as drastic as that sounds. As anyone who has gone through this will agree, I'm sure, it takes going through the whole experience before you can really decide what would have been best for you and what would have made you most comfortable." (Yes, I wonder if I will feel uneven, but again too. And yes, we can't know what the right decisions is until it's behind us! That's the challenge, isn't it?)

Thanks again, TaraLee! -Renbird

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Jul 29, 2020 10:27PM Beesie wrote:

Just to say, I have never seen my breast surgeon for check-ups after my mastectomy. Maybe some breast surgeons want to do that, but certainly not all.

My oncologist has done physical check-ups (breast area, nodes, etc.) as part of my follow-ups and my PCP has done breast exams when I've had a physical. But definitely no extra appointments ever with any doctor just to check my MX.

Screening after a MX is just a physical exam. With no reconstruction, or with subpectoral implants (my situation), because the breast tissue has been removed, the chest muscle comes right up against the skin. So any recurrence, whether against the chest wall or against the skin, would be noticeable as a nodule under the skin. It's actually much easier to find a localized (in the breast area) recurrence after a MX than after a lumpectomy, at least for those who go flat or have subpectoral implants, because there is no breast tissue in which the recurrence can hide.



“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 29, 2020 11:43PM renbird wrote:

Thanks, Beesie-

More good information. There are so many interesting nuances to every person’s treatment and follow up. Thanks so much once again!
-Renbird

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Jul 30, 2020 06:13PM - edited Jul 30, 2020 06:25PM by ruthbru

I was very happy that I was able to have a lumpectomy. I wanted my life to get back to 'normal' as quickly as possible. I still had a kid in high school & didn't want to miss out on any more of the fun stuff than I had to. Plus I like having breasts, and really, really hate surgery. I don't know that I could have gone through the additional surgery (or surgeries) that reconstruction would bring. Everyone has a different take on what path they should take, really there is not a 'right answer'. But I will give you some answers and thoughts from my perspective:

Question for ladies who had: Lumpectomy with Radiation, sentinel nodes removed:

1. How long did it take you to recover? How did you feel 2 weeks out? One month out? Two months? What was the recovery process like? How soon could you drive? I am a teacher and took one week off. The recovery from the surgery was easy. I needed chemo and that was tough (although I worked through it). I remember how I felt during chemo more than I remember how I felt post-surgery (so it must not have been too bad). I drove after a week.

2. Also, any did stiffness? numbness? pain? last? after your lumpectomy? I had 11 lymph nodes removed so did have some stiffness & numbness in my arm, and still do if I don't exercise. As far as the breast goes, I don't remember any stiffness or lasting pain. I had some pain after surgery, as you would after any surgery. Every once and awhile, and for many years, I would get 'zaps', which were the nerves growing back together. I would think they might be even more intense after a mastectomy. ????

3. How long dis your drains have to stay in? A couple days.

4. What was your experience with radiation like? I did chemo first, so radiation (for me) was a piece of cake. I actually felt my energy returning during radiation (there is no 'typical' experience, but that was mine).


An older friend of mine is a surgerical nurse. Many decades ago, when she was diagnosed with breast cancer, the only choice was a mastectomy. She had reconstruction years later when that became an option. She has seen breast cancer from both sides of the operating table. Her advice to me was, "If you have the option of a lumpectomy, take it!" So.....that is my take on things.


"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Jul 30, 2020 07:54PM blue22 wrote:

Hi Renbird,

I had both at the same time- one breast with mastectomy and ALND, and lumpectomy in the other breast. This was what the Drs. recommended.

The worst part I feel was the lymph node removal. The lumpectomy was barely noticeable compared to mastectomy and lymph node removal.

Because I had IBC, I had radiation on the mastectomy side. I did not have radiation on the lumpectomy side, they wanted to focus on the IBC and radiation for that is different from typical radiation treatment.

I did not get reconstruction, and I don't miss my breast at all (I am alive, that is enough). I try not to worry about the remaining breast. The lumpectomy was for ALDH, which turned out to be DCIS. I now have to have screening mammograms and MRIs every 6 months, and have already had to have a biopsy in that breast due to suspicious micro-calcifications. If I could wish it away, I would.

I think surgery was probably the easiest of what I went through and am currently going through.

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/14/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 7/29/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)
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Jul 30, 2020 09:18PM - edited Jul 30, 2020 09:22PM by alto

I'm glad you're getting a third opinion. I hope it's helpful in your decision. One question I would ask is what is the rate of re-excision - the odds you may need to go back for a second or third surgery to get all the cancer? I was told a mastectomy was not needed, but I ended up needing a mastectomy after the lumpectomy and re-excision had positive margins. I guess I just would have like to know my odds of that up front because if they told me their re-excision rate was 40%, for example (I think in Canada it's lower - like 25%), I probably would have saved some time and money. :)

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 11/11/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/16/2019 Mastectomy: Right
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Jul 30, 2020 09:35PM - edited Jul 30, 2020 09:36PM by kksmom3

Renbird, I would ask them all if they think you'll be "malformed" at all. Being close to your ribs, maybe not.......they see breasts after surgery all the time, so I would hope they could give you a realistic expectation. In my case, he point blank told me I would not be "deformed." He practically guaranteed it. And I am not, at all! But do get more opinions, then you can make the best choice for you. I know if I am unfortunate enough to have it come back, I will get rid of both. I will be done with it. But, it can still come back after mastectomy. My SIL's did, and a lady in my in-person support group did. My SIL's along the scar line and the other lady's was a lump in her armpit. Her MO felt it and knew! She had no idea. Not to scare you, this is pretty rare. You will make the best decision for you.

Dx 8/8/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 10/1/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Jul 31, 2020 06:52AM - edited Jul 31, 2020 07:21AM by TaraLeeOm

Beesi, because I had such a small amount of DCIS and opted for the mastectomy, my oncologist told me I no longer need to see him. Perhaps that is why it was recommended to me that I see a breast surgeon for the Mx.

One way or another, the whole breast gets a mammography and the Mx needs to be seen by some kind of doctor, whether you do it all in one appointment or spread it out over two.

Dx 3/15/2018, DCIS, Left, <1cm, Stage 0, Grade 2, ER+ Surgery 5/22/2018 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement Dx 5/29/2018, DCIS, Left, <1cm, Stage 0, 0/3 nodes, ER+/PR+
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Jul 31, 2020 08:17AM Beesie wrote:

Tara, yes that's probably it. I recall my BS saying that there was no reason for him to continue to see me since the Oncologist would be seeing me. Your situation is a bit more unusual then, since you had DCIS and I assume from your signature line you did not take Tamoxifen or an AI, so there was no reason to be followed by an MO. That's not the case for anyone with invasive breast cancer or those who continue with endocrine therapy. Here in Ontario, the PCP (or Gyne) also plays a role and is expected to do breast exams once a patient stops seeing both the MO and BS, whether that's at year 2 or year 5 or year 10.

My screening facility started a while back to do mammograms of reconstructed breasts. After not having that done for the first few years, I was quite surprised when I went for my annual mammogram and I was told that they would do a mammo on my implant reconstructed breast. They said they had changed their protocol. It was easy and painless. I don't know what they do with women who don't have reconstruction but I know that sometimes men get mammograms so maybe they've got a way to do it.

That said, with either a flat chest or subpectoral implants, it is really easy to do breast self-exams. This board is full of posts from women who have found tiny nodules in their reconstructed breasts - most often, it turns out to be nothing serious, either a stitch or fat necrosis. But it seems that it's the patients themselves who almost always find a local (in the breast area) recurrence after a MX. The development of a nodule on an otherwise relatively flat taut surface is pretty noticeable. For me the value of the check-up by my MO is checking the neck, chest and underarm nodes, which they are much more expert at than I.

I do agree completely with your comment "As anyone who has gone through this will agree, I'm sure, it takes going through the whole experience before you can really decide what would have been best for you and what would have made you most comfortable." There is so much that we can't predict about how our bodies will deal with surgery and how our minds will react to what happens in the future, whether it's being flat or living with reconstruction or having post-MX problems or dealing with radiation or having regular screenings & possibly call-backs.... One thing I found is that how I've felt about my MX and reconstruction has changed so many times over the years. My initial reaction was extremely positive, since I had a very easy time with the surgery and reconstruction. But there have been periods over the years when I've had to deal with issues and I've been very frustrated. Of course we don't have the benefit of hindsight when we are making this decision. So for this reason, I think it's really important that anyone making the decision between a lumpectomy + rads vs a UMX vs a BMX educate themselves about all the possibilities of what might happen, both good and bad - facing a bad result or side effect is always challenging but it's much more difficult to deal with if what happens is completely unexpected.

None of us ever wanted to be in a position to have to make this decision. None of the choices are good ones. I've often advised that rather than try to figure out which option is best or preferred, instead try to determine under which option you can live most easily should the results not be favorable or should you encounter problems. Then you will be happy if things go well and prepared if they don't. And you won't be second guessing yourself. That's what's important - given that there are so many unknowns ahead, my advice is to do your homework and educate yourself about each of the choices, make the decision that feels right to you, and then never look back.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 31, 2020 08:44AM TaraLeeOm wrote:

Thank you, Beesie, for that info on the latest in mammographies. It would be such a relief for me to be able to get them both checked at the same time. As it stands now, we just moved and I need to find a new breast surgeon. I went for a consult with one who also does mammos, ultrasounds, etc., all out of her office. She wanted to book me for 4 procedures, all on different days. A Mammo, an MRI and ultrasound on the MX, a BRCA test. I asked if I could at least get the BRCA, which is just a blood test, on the same day as one of the others, and was told no. Needless to say, I am still looking for a breast surgeon.

Dx 3/15/2018, DCIS, Left, <1cm, Stage 0, Grade 2, ER+ Surgery 5/22/2018 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement Dx 5/29/2018, DCIS, Left, <1cm, Stage 0, 0/3 nodes, ER+/PR+
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Aug 11, 2020 04:58PM renbird wrote:

Hi KKSMom-

Thanks so much for writing to me. It seems we have similar diagnoses. I hate to be too personal, but may I ask:

1. What was your bra cup size going into your lumpectomy? (I'm barely an A)

2. How much DCIS did you have in the surrounding tissue? (I have some, and random calcifications.)

3. How many weeks of radiation, if any, did you have after the lumpectomy? (They are telling me 5 weeks, 20 rounds)

Thank you!

-Renbird



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Aug 11, 2020 05:02PM renbird wrote:

Blue22-

Thank you for sharing your experience with me, Blue22!

You said the surgery was the easy part compared to what you are "currently going though". What is it you are going through now, may I ask? What about your current experience has been difficult? -Renbird


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Aug 11, 2020 05:04PM renbird wrote:

KKSMom-

PS- The last surgeon said a golf ball sized lumpectomy and 5 weeks of radiation on my barely A cup breast night leave her pointing a bit to the left, and nipple might face down a bit.

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Aug 16, 2020 06:58PM - edited Aug 16, 2020 07:03PM by kksmom3

Hi renbird, I live in Iowa, we got walloped by a derecho and have been without power for 5 days. Happily, I have it now and don't mind answering a fellow pink sister's questions one bit.

1. I am lopsided, always have been. I'm like a full A on the left, lumpectomy side (R) I am more of a perfect A. The surgeon took out a golf ball size chunk of tissue right under my nipple, and I can tell a bit that it's even smaller now :( but really only I can notice. Bras still fit the same. When I came out of surgery and they told me that, I was extremely alarmed! I wondered if I had a boob left! However, the nurse told me that that is pretty standard. Before surgery, I didn't know enough to ask, and they didn't tell me. Area of concern was around 6 mm, so I guess I thought it'd be a smaller area. Oh well. I did have really good clean margins, which is what I'd most definitely rather have!

2. The DCIS was approximately 6 mm. Best guess, they said they really couldn't tell very well. I do know that it is out!

3. 4 weeks of radiation, the hypofractionated kind, 16 whole breast, and 4 boosts to the tumor site.

4. I am officially breast CANCER FREE AS OF YESTERDAY - 2 YEARS!!

5. I really have no comparison, but the mammo tech and then a different U/S tech both commented on what a nice job cosmetically my surgeon did. I saw a dermatologist a year ago for just an all-over skin check, and she said it looked really good too, so I guess it is very pretty still...lol lol But really, good to know! Like most of us, I just wanted it OUT, and didn't care what it looked like cosmetically, but now I guess I care!

Dx 8/8/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 10/1/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Aug 16, 2020 08:23PM Cutie wrote:

just want to share my experience. I had BC last year and had chemo first. Then no mass and dis BMX because I didn't want to do mammogram and worries. I kept flat no reconstruction. My breasts were small too. When I had BMX, luckily my surgeon didn't put drains. Only the night after surgery was painful. I think it took 1 week to recover eventually. At first when i walked, i felt i had to hold my chest area. I used tylenol for 3 days. If you are going to do mastectomy, ask your surgeon any option for no drain bags. My surgeon wrapped the stitches area from back to front. I didn't have much issues. Then after 1.5 months, i had physical therapy. Before therapy, i did exercises directed by the surgeon. Those are very helpful. You can look for on line too search for exercise after breast surgery . I first felt numbed and my MO told me it will be forever. But i went to see naturopathic doctor and he gave me supplicants to detoxing and i have no more numbness.

Hope my experience of sharing helps you. Good luck.

Cutie

Dx 12/28/2018, IDC, Right, 3cm, Stage IIIA, Grade 3, ER-/PR+, HER2+
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Aug 19, 2020 08:55AM renbird wrote:

Hi Cutie-

Wow. What a story. I wonder how you got away without drains? That's great! Also, I'm SO glad to hear your numbness went away! May I ask the name of your naturopathic doc who gave you the detox supplicants? Thank you! -Ren

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Aug 19, 2020 09:09AM renbird wrote:

Hi KKSMom3-

I hope things have settled down for you after the derechos! Do you have power yet? How is your house? Town?

Thank you so much for writing back to me, pink sister. ; ) You and I seem to have a lot in common in our situations and thinking.

One difference is: My lump is the size of a Skittle and the surrounding area of DCIS is about 2cm, not 6mm. So that makes me wonder if the "golf ball" size piece of tissue they are planning on taking might be much bigger than that. Thoughts?

I am thinking about telling my surgeon: "Start with the lumpectomy, but if it seems like you can't make it work with what I have to get a decent outcome, or if any margins come back positive (of course!) take the whole breast while I'm in there."

-Thoughts?

Also, may I ask the following?

-How was your radiation experience? (I would likely have 4 weeks too.)

-What does the skin look/feel like now?

Thank you! XO -Renbird

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Aug 19, 2020 11:04AM - edited Aug 19, 2020 11:23AM by kksmom3

Hi renbird, my siding and roof may need to be replaced, but they're not leaking or anything like that. 90% of homes in Cedar Rapids were damaged. Many horribly. I am not complaining one bit. We got power n the 5th day. Many other's still do not. We are #IowaStrong, however.

I don't think they would first start with lumpectomy and then progress to mastectomy......... here is why. Insider information - I used to work in the OR. There is a lot of behind the scenes stuff a patient would never see. All the instrumentation is probably different for a lump vs mastectomy. Time needed in the OR, scheduling etc. But the MAIN reason is because your surgeon should be able to tell you if you will have an acceptable cosmetic outcome. Mine was really adamant that I would.

I can't answer to the golf ball size of removal or not. It probably makes a difference where it's located too. Really, only your surgeon can tell you the answer. Have you sought a 2nd opinion?

I saw elsewhere you said your breast could look different. I would ask if you were to go with a lumpectomy, and you didn't like the look of it, could you have plastic surgery later? I think? that that would be covered under that 1989 law which states plastic surgery is covered, etc. I hope you know what I'm talking about....... lol

I'd ask though, if they do the lump and you don't like it , can they just go back in a few weeks and remove it?

It really is a personal decision. I did ok with the 20 rads. My skin is completely back to normal. My breast does however, have some tingling nerve damage and according to my oncologist, "they did a lot to that breast." I don't know if it still bothers me 2 years later because of the surgery, or is it because of radiation, or is it both? I'll never likely know. I take a daily does of gabapentin, which really helps a lot. I can tell that it is slowly getting better.

The surgery and rads creates a lot of scar tissue, so in my case, it hurts a little still. I've also talked to the women in my in person support group and most of them with lumpectomies have zero issues.

Also, what kind/type of rads are they proposing? I couldn't have the kind with the balloon catheter insert because my breast was too small. Aargh.

It's just really hard to know what to do. I'm 63, but I still wanted to keep my breast, a lot depends on what your gut and heart are telling you. Please let me know how you come out!


Edited to add I see you have had 2nd opinions.



Dx 8/8/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 10/1/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Aug 19, 2020 08:41PM - edited Aug 19, 2020 08:44PM by alto

I had to have multiple surgeries - they couldn't just switch from lumpectomy to mastectomy (if only!) - and I think that's pretty standard at most hospitals, where they don't do pathology at the time of the surgery. Before surgery, I had to sign paperwork approving the exact procedure. And of course, billing is better for them if they do multiple surgeries. ;) But mainly, they usually have to send the tissue to a lab to know whether the margins are clear or not.

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 11/11/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/16/2019 Mastectomy: Right

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