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Topic: Crippled to make a decision. Need your help!

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Jun 19, 2019 11:19AM

akhan2019 wrote:

My wife was diagnosed with IDC on left side based on the core needle biopsy made on 5/17/2019. Now she can't make a decision on what surgery to do next. Any input will be greatly appreciated.

Some background info: She is 40 years old. Her breast size is small, tissue is dense, and there are three sites of microcalcification from one of which the biopsy was made. The span of the three sites is approximately 3cmx3cm. Genetic testing is basically negative and the immune test of the biopsy is positive to the hormones and negative to HER2.

She is debating between lumpectomy vs left side mastectomy.

She likes lumpectomy because it is an easier procedure in terms of her post-op care, recovery, etc. But she's strongly against radio therapy. We talked about lx w/o radio and go straight to mx as soon as there is a recurrence, but she's not a big fan either, mainly because of concerns about insurance coverage, job security (she will be on short term disability for some time) etc.

She likes mastectomy, because it may bring her the peace of mind. But she hates the long recovery, pain, drainage, etc. She's also thinking about going w/o reconstruction because the PS is planning on a two-step procedure, expander first, implant 4 months later.

One thing she's sure about is that she wants to get it out asap. She's extremely anxious right now.

"I don't want to make a decision. I don't like either of them." This was what she told me today. She even asked me to toss a coin to make a decision.

She has the appointment for mapping today and surgery tomorrow, but she's still not certain what to do.

Thank you very much for reading this post and any advice you would like to offer.

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Jun 19, 2019 11:44AM Moderators wrote:

Hi akhan and welcome to Breastcancer.org,

We're so very sorry to hear of your wife's recent diagnosis, but we're really glad you've found us. You're sure to find our Community an incredible source of information, advice, and support -- we're all here for you both!

You're sure to receive some helpful responses shortly from others who have been where your wife is, making tough treatment decisions. In the meantime, you may want to check out the main Breastcancer.org site's page on Lumpectomy vs. Mastectomy for some helpful things to consider and benefits and drawbacks to weigh.

We hope this helps and that you come back soon to share and get support.

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jun 19, 2019 12:14PM Ingerp wrote:

Most women on here went through their own thought process/decision tree. I never considered a mastectomy when a lumpectomy was possible. When the radiation oncologist told me that radiation following lumpectomy would cut my probability of recurrence in half, it was an easy decision. Your wife needs to think through everything, come to a decision, and then be at peace.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/22/2016 Lumpectomy Surgery 4/19/2016 Lumpectomy: Left Radiation Therapy 5/17/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/12/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/17/2018 Herceptin (trastuzumab) Chemotherapy 5/17/2018 Taxol (paclitaxel) Radiation Therapy 8/19/2018 Whole-breast: Breast
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Jun 19, 2019 12:38PM marylinn222 wrote:

Akhan,

I can tell you that I am/was in your wife's shoes. Same exact scenario. I was barely an A cup, ER/PR+ Her2-. My site was 1.8cm. IDC. I went with a double mastectomy. The reason being, a lumpectomy would have left me with virtually nothing anyway and it gave me a broader peace of mind. Secondly, I did not have reconstruction. I chose to not have reconstruction because I was so small chested to begin with and they could only make me a small C, which I did not want. I'm incredibly active (runner, ice hockey coach, triathlete). Because I had a mastectomy, I did not require radiation. I did have chemo though (my choice as my oncotype was 19, right on the bubble). I just finished my chemo yesterday. The recovery of a mastectomy without reconstruction has been very easy. The drains are temporary and manageable and you only have them about a week. I was back to walk/running in about 2.5 weeks. Good luck with your decision!

ML

Dx 2/7/2019, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Jun 19, 2019 12:44PM Lisey wrote:

I am so GLAD I got a mastectomy as I had dense breasts and the mammogram missed my tumor. I was 41 when diagnosed and honestly, now that I'm flat and fabulous (a great private facebook group of thousands of us women rocking being flat) I honestly feel I look younger and fitter than with my huge heavy boobs.

I didn't want the radiation, since skin cancer is something I've had.... and really wanted symmetry.

I would not get implants as having foreign plastic things in my body (actually sandwiched in my eviscerated pec muscles) was horrifying to me (and I started to go down that stage not realizing how bad it was)
If you support her decision to go flat, she will have an amazing recovery. Just make sure she finds a surgeon who knows how to make flat look good. Too many surgeons leaves skin 'just in case'. I personally had to have a revision surgery because my jerk PT (who pushed implants on me) thought I'd change my mind when I demanded the TEs out.


Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/6/2016 Mastectomy: Left, Right Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 19, 2019 12:49PM akhan2019 wrote:

Thank you so much for everyone! She's leaning towards lx, for now. Would it be a problem with the insurance company if, after the lx, she wants a mx before a recurrence happens?

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Jun 19, 2019 12:51PM Lisey wrote:

Forgot to Add, the best advice is for her to join numerous facebook groups (like Flat and Fabulous, and maybe a DIEP group, and an Implant group) so she can see what to expect. I was in an Implant group for a week and that is when I realized I did NOT want implants and all their crap afterall. Seeing women get ALCL from implants (cancer), seeing women with capsular contraction, with Toxic sickness, with hard and cold lumps, and then theres infection and leakage.... Nope... Get those F'rs out of me ASAP. And I did. I have never once felt self conscious being flat... I just feel lighter, thinner and can finally get more exercise.


Here's another pic of how great being Flat can be.... (and honestly, there's a group of younger women who post in Flat and Fabulous who are way more brave than I and wearing outfits women with boobs never could. They look like supermodels)




Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/6/2016 Mastectomy: Left, Right Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 19, 2019 12:58PM Lisey wrote:

Akhan, if you live in the US, the law protects women in the following ways:

1) They can get and demand symmetry, so Uniboobers, can request the healthy breast be removed (I'm glad I did both at the same time, it was much less work than two surgeries and recoveries.. plus surgery is always a risk, why do two if you can do one?)

2) They can choose flat and then years later insist on reconstruction. Delayed reconstruction is protected. So going flat initially doesn't remove that option. It does however remove the extra skin, so TEs would be required if she ever wanted implants.

3) They can get revision surgery (like I did) if there are issues from the first surgery (like extra skin from a misogynist Barbie pushing PT).

Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/6/2016 Mastectomy: Left, Right Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 19, 2019 01:07PM Spoonie77 wrote:

Hi Akan - I'm sorry your wife has joined the "club". :( I'm glad you are here in an effort to help her on this journey. This community is such a great place for support.

I was 41 when dxd. If my genetics had come back positive, I was planning on a BILMX. Thankfully, I was negative, like your wife. I have dense breasts but larger chest than she does. Every decision is so difficult and so very personal. The thing I can say that helped me was to see a Plastic Surgeon for the pre op appt, go over the options, talk with my Oncology Surgeon, just basically go through all the appts and make a pros/cons list. Like your wife, I wanted it out asap, but I also knew that whatever decision I made I would be living with for the rest of my life so I needed to slow down just a bit to ensure I wouldn't regret anything down the road.

I ended up choosing Lumpectomy for 2 main reasons. I'm used to having a larger chest and I was scared at how much of myself, my sexuality, my "me" that I would lose without having them. Also, because having a BIMX did not increase my overall survival vs a Lumpectomy. Thirdly, my OS said the 3 cm mass would not cause much change in size in my L breast compared to my R. I bordered on C/D cups, so much more to work with. I think if I had had a smaller chest size, removing that much of mass, larger than a golfball, would have been more obvious, therefore requiring more surgery in the future to balance them out etc and might have influenced my decision more.

I have healed pretty well from the surgery itself and I think in a few years the scars will be nearly non-existent. I did require RADs because of this, and in hindsight, I sometimes wish I had chosen MX for a number of reasons.

1) Skipping Rads I would not have developed Breast Lymphedema that I will have to manage/treat the rest of my life, also I would not have developed Fibrosis, a broken rib, and been dxd with Costochondritis. Not having that constant pain from these SEs would not remind me so often of cancer IMO. (that being said - I'm a "zebra" with a Spoonie Life and everything weird that can happen ie rare SEs etc happens to me)

2) I worry about recurrence.....alot. I think if I had opted for the MX I would have less to worry about, but then again, my cousin had a BLMX, was fine for 14 years, and then last year, diagnosed with a local recurrence between her implant and skin. So, IDK.

3) I'm younger and have many years of life ahead, and many more years for cancer to possibly reappear. I wish I had fully understood that before surgery. Again, removing breast tissue is not a guarantee nor increase survival, but there is something to be said for mental health and anxiety levels as well. I'm told that gets easier to deal with as the years come and go, but this first year has been tough, mentally.

Ok, sorry to have blathered on, hopefully something in there helps your wife a bit with her process. My journey has been bumpy, from my reading here, it's not the norm or the majority, that being said I'm around if your wife has questions or the like. Keep us posted on what the next few weeks bring.

Life long "Spoonie". Entered the BC world @41 w/ DX of IDC. DXd @ 42 w/ MS. Treatment: LX/SLNB/RADs. Plan A: 5mg Tamoxifen = 0 QOL. Plan B: Zoladex = Confirmed Allergy. Plan C: Unknown, the journey continues. PS: Not a doctor, just a curious Googler. Dx 7/20/2018, IDC, Left, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 8/30/2018, DCIS, Left, 1cm, Stage 0, Grade 2 Surgery 8/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/1/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 3/30/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/2/2019 Zoladex (goserelin)
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Jun 19, 2019 01:15PM - edited Jun 19, 2019 01:15PM by Spoonie77

Lisey - I second your advice about joining groups, looking at photos of scars, healing, procedures, etc. See how those ladies in all categories live daily in the shoes you are thinking about wearing. I was very leery of FOOBs after a MX for just the reasons you listed. Surely, given my magnetism for SEs, I would have had an awful ride that route. At any rate, advise her to do some homework, to google and join, and ask questions. It can't hurt. In hindsight, I wish I had done more research into the Flat and Fab life. You ladies truly do rock it!

Life long "Spoonie". Entered the BC world @41 w/ DX of IDC. DXd @ 42 w/ MS. Treatment: LX/SLNB/RADs. Plan A: 5mg Tamoxifen = 0 QOL. Plan B: Zoladex = Confirmed Allergy. Plan C: Unknown, the journey continues. PS: Not a doctor, just a curious Googler. Dx 7/20/2018, IDC, Left, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 8/30/2018, DCIS, Left, 1cm, Stage 0, Grade 2 Surgery 8/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/1/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 3/30/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/2/2019 Zoladex (goserelin)
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Jun 19, 2019 02:32PM SummerAngel wrote:

What's your wife's risk tolerance level? I ask because that can make a big difference in her decision. If she's absolutely without-a-doubt going to refuse radiation, then she can either go for the mastectomy, which will make it less likely to be needed anyway, or she can go with a lumpectomy and accept a greater risk of recurrence. I personally have a pretty high tolerance for risk, so for me the lumpectomy would be my first choice.

Someone on here posts that if you really can't decide you can always do a lumpectomy first and go for the mastectomy later if you change your mind, and that's a very valid point. It would be covered by insurance either way.

(As for reconstruction, I have implants from the two-step process and am very happy with them.)

Age at dx: 45. Oncotype, left-side tumor: 9. Right side had multifocal IDC and "extensive" LCIS. Isolated tumor cells in 1 right-side node. Dx 4/3/2015, IDC, Left, 2cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 4/27/2015, IDC, Right, 1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 6/1/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right Surgery 6/1/2015 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/27/2015 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 12/3/2015 Reconstruction (left): Fat grafting, Nipple reconstruction; Reconstruction (right): Fat grafting, Nipple reconstruction
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Jun 19, 2019 02:56PM Cpeachymom wrote:

akhan- If she is strongly against radiation, which given it’s on her left side I don’t blame her, then mastectomy is probably the way to go. I think something like 30% of lumpectomies require a second surgery to get clean margins anyway. Without reconstruction, her recovery shouldn’t be too bad. I only had one drain for about a week, maybe 5 days, I can’t remember exactly. Mastectomy is no guarantee that she won’t need rads, I ended up needing rads due to a positive node. Had serious side effects to my lung. There is no one “right” answer, just the answer she can live with a year, two years, five years from now.

39 at Dx. Fate whispers to the warrior, 'You can not withstand the storm.' The warrior whispers back, 'I am the storm.' Dx 6/21/2017, IDC, Right, 4cm, Stage IIB, Grade 1, 1/3 nodes, ER+/PR+, HER2- Surgery 7/5/2017 Lymph node removal: Sentinel; Mastectomy: Right Hormonal Therapy 9/11/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 9/18/2017 Lymph nodes, Chest wall Surgery 10/10/2018 Reconstruction (right): Tissue expander placement Surgery 3/24/2019 Reconstruction (right): Saline implant Hormonal Therapy Zoladex (goserelin)
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Jun 19, 2019 03:08PM Mobetta wrote:

Hi, I'm sorry that your wife is going through this. Ten years ago, I had a lumpectomy with radiation for IDC. This year I had a reoccurance in the same breast . This time the cancer had just left the milk duct. Luckily, I went back to a good hospital every year for my mammograms and the newer machines caught the cancer early. and so I had a mastectomy, reconstruction and four infusions of chemo. I feel good about my decision to start with the lumpectomy. I had ten great active years cancer free, and the recovery from a lumpectomy was a whole lot easier than the mastectomy. My breast looked and felt good after the lumpectomy and I could wear whatever I wanted and do whatever I wanted physically. I remember that the decision to have radiation was a tough one, but my surgeon recommended it and back then I wanted the insurance I felt that radiation gave me. Someone I knew who didn't do radiation had passed away and I think that made me fearful to refuse it. But, my cancer came back anyways after ten years, so who knows if it was the right choice. It did make it harder for me to have the implant put in after the recent mastectomy since now I have irradiated skin. But it's not terrible, just a little weird. It just seems like each person's body acts differently and you have to do what feels right for you. It's traumatic right now, but there will be normalcy in your life again in the future. Best wishes to you both. ~Mobetta

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Jun 19, 2019 07:52PM edwards750 wrote:

Bummer Mobetta - 10 years and a recurrence. Ugh. No guarantees.

I had a lumpectomy and 33 radiation treatments. I had a tumor. My BS called it wimpy whatever that means. Anyway I’m 8 years out in August God willing. I took Tamoxifen for 5 years.

I’m glad I did the lumpectomy too but I do have a pretty ugly scar. Fortunately it’s on the outside so when I wear a T-shirt it doesn’t look weird.

My MO said the survival rates for lumpectomy vs Mastectomy are the same. Hard to believe but true. My sister had a MX and her BC came bs k after 4 years at the MX scar. At least it wasn’t metastatic.

It’s a crap shoot either way.

Diane

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Jun 19, 2019 08:09PM TB90 wrote:

Survival rate is close to equal but recurrence rate is higher for lx. Recurrences are not necessarily terminal, but they are definitely stressful and very inconvenient. Just a consideration. No decision is the right decision unless it takes your life, personality and unique dx into consideration. All the best!!

Dx 11/28/2013, DCIS, Grade 2 Surgery 12/17/2013 Mastectomy: Left Radiation Therapy 2/19/2014 Breast
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Jun 19, 2019 08:21PM Rrobin0200 wrote:

to each their own.. it’s a personal choice. There’s no right or wrong way. Personally, I chose the mastectomy route and I have absolutely no regrets. I was 37 at the time. My recovery was not bad at all. Once the drains were out, the healing went faster. I didn’t like the idea of radiation, so mastectomy was my only choice. Seriously a BMX was one of the best decisions I’ve made. Best of luck.

Dx 3/6/2017, DCIS, Left, 1cm, Stage 0, Grade 3, 0/4 nodes, ER-/PR- Surgery 3/31/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jun 19, 2019 09:18PM jessie123 wrote:

Lumpectomy with radiation makes the procedure equal to mastectomy as far a long term survival goes. However, if she refuses the radiation then the lumpectomy is not as good at assuring long term survival. The two procedures are no longer equal. I also spent months deciding between the two. Finally someone posted that I could start small (lumpectomy) and go big (MX) later if I had to. That's what I did. Radiation is not as dangerous as it was in the past with all the advanced computers. I had hypofractionated radiation which is 16 days and had no blistering or peeling. Also, if she is left breasted she may not have to worry about heart involvement anymore and almost no lung involvement. Also, there is a new radiation procedure called the Prone board where she would lay on her stomach to avoid all heart and lung involvement. Maybe, it would help if she talked to the radiation oncologist before she makes her decision. It's just not a good idea to have a lumpectomy without radiation.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/14/2019 Whole-breast: Breast
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Jun 19, 2019 11:50PM Meow13 wrote:

Well I will add my 2 cents. I was told mastectomy I was horrified. Perfectly healthy 53 years old, I did the mastectomy and 4 months later DIEP. The surgeries were easy and I healed very well. My reconstruction looked just like my real side just a very fine white line scar. I am happy. I have really sensitive skin iching can drive me crazy I am so glad I avoided radiation. Sensation of reconstruction is still coming back, after 7 years.

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Jun 20, 2019 12:07AM SSInUK wrote:

I had mastectomy and radiation - no choice. I have hated the outcome of the mastectomy but had no problems from rads. We are all different. But not everyone finds mastectomy easy. Good luck

Dx 11/2014, IDC, Left, 5cm, Stage IIIA, Grade 2, 5/17 nodes, ER+/PR+, HER2+ Dx 3/30/2016, IDC, Left, Stage IIIC, 2/2 nodes, ER+/PR+, HER2- Surgery Reconstruction (left): DIEP flap Radiation Therapy External: Lymph nodes Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Targeted Therapy Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lymph node removal: Underarm/Axillary Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Left Chemotherapy AC + T (Taxol)
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Jun 20, 2019 09:15AM ruthbru wrote:

If she really isn't sure, then my suggestion is a lumpectomy. If she finds she is unhappy with it, she can always go back and have a mastectomy later. Once your breasts are gone, they are gone forever. Reconstruction is a long, and for many, difficult process (and there is no guarantee that she will be happy with the results either). Having a mastectomy is NOT a guarantee against needing radiation. It shouldn't be your primary reason for having a mastectomy, as you need to know going it that it might still be on the table.

"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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Jun 20, 2019 09:19AM ruthbru wrote:

Here is a wonderful, helpful, and impartial post on the topic written by one of our resident experts, Beesie.

Years ago I put together a list of considerations for someone who was making the surgical choice between a lumpectomy, mastectomy and bilateral mastectomy. Over time I continued to refine the list and add to it, thanks to great input from many others. Over the years I have posted this many times, and although I don't spend much time on this board anymore, a number of the long-time members here have continued to re-post it when the question comes up. In reviewing the post, I have updated a few of the considerations based on new research, what is now available with reconstruction, and new issues I've seen raised on this board. I have also rewritten and added to the research section at the beginning, to incorporate the latest research findings. I posted this yesterday in someone else's thread but upon thinking about it, I decided to start a new thread instead, so that the post is easier to find, since so many people ask about it.

Some women have gone through the list and decided to have a lumpectomy, others have chosen a single mastectomy and others have opted for a bilateral mastectomy. So the purpose is simply to help women figure out what's right for them - both in the short term but more importantly, over the long term. Please note that this list is specifically written for those who have invasive breast cancer; some of the considerations are different for DCIS and I posted a similar list for women with DCIS on the first page of this thread: Topic: lumpectomy vs mastectomy - why did you choose your route? (DCIS)

Before getting to the list of considerations, here is some research that compares long-term recurrence and survival results. I'm including this because sometimes women choose to have a MX or BMX because they believe that it's a more aggressive approach. If that's a big part of someone's rationale, it's important to look at the research to see if that's really true. What the research has shown is that in most circumstances, long-term survival is the same regardless of whether one chooses a LX with radiation, a Unilateral Mastectomy, or a Bilateral Mastectomy. This is largely because it's not the breast cancer in the breast that affects survival, but it's breast cancer that has moved beyond the breast that could lead to the development of a metastatic recurrence. The risk that everyone with invasive breast cancer has is that some breast cancer cells might have moved beyond the breast prior to surgery. So the type of surgery one has, whether it's a lumpectomy with rads or a MX or a BMX, as a rule doesn't affect survival rates. It is important to note however that with a lumpectomy, it is assumed that the patient will also have radiation therapy. In fact, a number of recent studies suggest that there may be a small survival advantage in having a Lumpectomy with rads (vs. having a UMX or BMX) possibly due to the benefits of having radiation.

***UPDATED*** Here are a few studies that compare the different surgical approaches:

Survival Comparisons for Breast Conserving Surgery and Mastectomy Revisited: Community Experience and the Role of Radiation Therapy

Overall survival according to type of surgery in young (≤40 years) early breast cancer patients: A systematic meta-analysis comparing breast-conserving surgery versus mastectomy

Breast-conserving surgery followed by whole-breast irradiation offers survival benefits over mastectomy without irradiation.

Survival after lumpectomy and mastectomy for early stage invasive breast cancer: the effect of age and hormone receptor status

Twenty-Year Follow-up of a Randomized Trial Comparing Total Mastectomy, Lumpectomy, and Lumpectomy plus Irradiation for the Treatment of Invasive Breast Cancer

Twenty-Year Follow-up of a Randomized Study Comparing Breast-Conserving Surgery with Radical Mastectomy for Early Breast Cancer

Lastly, the following is not a research study, but is an excellent write-up summarizing the implications of the most recent research:

Decision Making in the Surgical Management of Invasive Breast Cancer—Part 1: Lumpectomy, Mastectomy, and Contralateral Prophylactic Mastectomy


***UPDATED*** Now, on to the list of considerations:

  • Do you want to avoid radiation? If your cancer isn't near the chest wall and if your nodes are clear, then it may be possible to avoid radiation if you have a mastectomy. This is a big selling point for many women who choose to have mastectomies. However you should be aware that there is no guarantee that radiation may not be necessary even if you have a mastectomy, if some cancer cells are found near the chest wall, or if the area of invasive cancer is very large and/or if it turns out that you are node positive (particularly several nodes).
  • Do you want to avoid endocrine (hormone) therapy (Tamoxifen or an aromatase inhibitor) or Herceptin or chemo? It is very important to understand that if it's believed necessary or beneficial for you to have chemo or endocrine therapy, it won't make any difference if you have a lumpectomy or a mastectomy or a bilateral mastectomy. (Note that the exception is women with DCIS or possibly very early Stage I invasive cancer, who may be able to avoid Tamoxifen/an AI by having a mastectomy or a BMX.)
  • Does the length of the surgery and the length of the recovery period matter to you? For most women, a lumpectomy is a relatively easy surgery and recovery. After a lumpectomy, radiation usually is given for 6 weeks. A mastectomy is a longer, more complex surgery and the recovery period is longer.
  • How will you deal with the side effects from Radiation? (Note again that some women who have a MX may still require Rads.) For most patients the side effects of rads are not as difficult as they expected, but most women do experience some side effects. You should be prepared for some temporary discomfort, fatigue and skin irritation, particularly towards the end of your rads cycle. Most side effects go away a few weeks after treatment ends but if you have other health problems, particularly heart or lung problems, you may be at risk for more serious side effects. This can be an important consideration and should be discussed with your doctor.
  • Do you plan to have reconstruction if you have a Mastectomy (MX) or Bilateral Mastectomy (BMX)? If so, be aware that reconstruction, even "immediate" reconstruction, is usually a long process - many months - and most often requires more than one surgery. Some women have little discomfort during the reconstruction process but other women find the process to be very difficult - there is no way to know until you are going through it.
  • If you have a MX or BMX, how will you deal with possible complications with reconstruction? Some lucky women breeze through reconstruction but unfortunately, many have complications. These may be short-term and/or fixable or they may be long-term and difficult to fix. Common problems include ripples and indentations and unevenness. You may have lingering side effects (muscle pain, spasms, itching, etc.) on one side or both (if you have a BMX). If you have significant problems with your surgery or reconstruction, or if you don't end up with symmetry (symmetry is not a sure thing by any means, even if you have a bilateral mastectomy with reconstruction done on both sides at the same time), will you regret the decision to remove your breasts or your healthy breast? Are you prepared for the possibility of revision surgery?
  • How you do feel about your body image and how will this be affected by a mastectomy or BMX? A reconstructed breast is not the same as a real breast. Some women love their reconstructed breasts while some women hate them. Most probably fall in-between. Reconstructed breasts usually looks fine in clothing but may not appear natural when naked. They may not feel natural or move naturally, particularly if you have implant reconstruction. If you do choose to have a MX or BMX, options that will help you get a more natural appearance including having a nipple sparing mastectomy (NSM), having pre-pectoral implant reconstruction, or having autologous reconstruction (such as DIEP or GAP surgery). Not all plastic surgeons are trained to do these procedures so your surgeon might not present these options to you. Do your research and ask your surgeon about the type of procedures you are interested in. If he/she doesn't do that type of reconstruction, it may be worth the effort to find a plastic surgeon who does, in order to see if the option you prefer is available for you, depending on where your cancer is located in your breast and your body type.
  • If you have a MX or BMX, how do you feel about losing the natural feeling in your breast(s) and your nipple(s)? Are your nipples important to you sexually? A MX or BMX will change your body for the rest of your life and you have to be prepared for that. Keep in mind as well that even if you have a nipple sparing mastectomy, except in rare cases, the most feeling that can be retained in your nipples is about 20% - the nerves that affect 80% of nipple sensation are by necessity cut during the surgery and cannot be reconnected. Any breast/nipple feeling you regain will be surface feeling only (or phantom sensations, which are actually quite common and feel very real); there will be no feeling inside your breast, instead your breast will feel numb. For some, loss of breast/nipple sensation is a small price to pay; for others, it has a huge impact on their lives.
  • If you have a MX or BMX, how will you deal emotionally with the loss of your breast(s)? Some women are glad that their breast(s) is gone because it was the source of the cancer, but others become angry that cancer forced them to lose their breast(s). How do you think you will feel? Don't just consider how you feel now, as you are facing the breast cancer diagnosis, but try to think about how you will feel in a year and in a few years, once this diagnosis, and the fear, is well behind you.
  • If you have a lumpectomy, how will you deal emotionally with your 6 month or annual mammos and/or MRIs? For the first year or two after diagnosis, most women get very stressed when they have to go for their screenings. The good news is that usually this fear fades over time, but it can take a few years. For this reason, some women choose to have a BMX in order to avoid the anxiety of these checks.
  • If you have a MX or BMX, how will you feel about the minimal screening you will have in the future? For most women, a MX/BMX significantly reduces the risk of a localized (in the breast area) recurrence or a new primary breast cancer. However because it's impossible for even the best surgeon to remove every cell of breast tissue, there always remains a small risk (1% - 2%) that cancer could recur or develop in the area of the removed breast. But with no breast(s), most women no longer receive imaging tests - no more mammograms, ultrasounds or MRIs (although some with implants may get MRIs on occasion to check the integrity of the implant). Women who have a MX or BMX should be aware of this and need to consider how they will deal with this and what they will do to monitor their breasts.
  • Will removal of your breast(s) help you move on from having had cancer or will it hamper your ability to move on? Will you feel that the cancer is gone because your breast(s) is gone? Or will the loss of your breast(s) be a constant reminder that you had breast cancer?
  • Appearance issues aside, before making this decision you should find out what your doctors estimate your recurrence risk will be if you have a lumpectomy and radiation. Is this risk level one that you can live with or one that scares you? Will you live in constant fear or will you be comfortable that you've reduced your risk sufficiently and not worry except when you have your 6 month or annual screenings? If you'll always worry, then having a mastectomy might be a better option; many women get peace of mind by having a mastectomy. Keep in mind however that over time the fear will lessen, and having a MX or BMX does not mean that you have completely eliminated your breast cancer/recurrence risk; although the risk is low, you can still be diagnosed with BC or a recurrence even after a MX or BMX. Be aware too that while a mastectomy may significantly reduce your local (in the breast area) recurrence risk, it has no impact whatsoever on your risk of distant recurrence (i.e. mets).
  • Do you know your risk to get BC in your other (the non-cancer) breast? Is this a risk level that scares you? Or is this a risk level that you can live with? Breast cancer rarely recurs in the contralateral breast so your current diagnosis doesn't impact your other breast. However, anyone who's been diagnosed with BC one time is at higher risk to be diagnosed again with a new primary breast cancer (i.e. a cancer unrelated to the original diagnosis). This second breast cancer diagnosis could happen in just a few years or not for decades. As compared to the average woman who has not had breast cancer, several studies estimate that breast cancer patients have about double the risk to be diagnosed again over their lifetimes. This risk level may be compounded by the type of breast cancer you had (lobular breast cancer may be higher risk to occur contralaterally; the research goes both ways on this) or if you have other risk factors. Find out your risk level from your oncologist and determine if genetic testing might be appropriate for you based on your family history of cancer and/or your age and/or your ethnicity (those of Ashkenazi Jewish descent are at higher risk to carry a BRCA mutation). Those who have a genetic mutation may be significantly higher risk to get BC again (depending on the specific genetic mutation) and for many women, a positive genetic test result is a compelling reason to have a bilateral mastectomy. On the other hand, for some women a negative genetic test result helps with the decision to have a lumpectomy or single mastectomy rather than a bilateral. Talk to your doctor. Because we've all had breast cancer one time, we are all higher risk than the average woman to be diagnosed again but the risk level is different for each of us so find out your risk, based on everything that is unique to you.
  • How will you feel if you have a lumpectomy or UMX and at some point in the future (maybe in 2 years or maybe in 30 years) you get BC again, either a recurrence in the same breast or a new BC in either breast? Will you regret your decision and wish that you'd had a bilateral mastectomy? Or will you be grateful for the extra time that you had with your breasts, knowing that you made the best decision at the time with the information that you had?
  • How will you feel if you have a bilateral mastectomy and no cancer or high risk conditions are found in the other breast? Will you question (either immediately or years in the future) why you made the decision to have the bilateral? Or will you be satisfied that you made the best decision with the information you had?

.I hope that this helps.

And remember.... this is your decision and yours alone. Don't make the decision based on what someone else (partner, parent, child, friend) wants you to do or based on what another breast cancer patient did. How someone else feels about each of these considerations, and the experience that someone else had with their surgery and recovery might be very different than how you will feel and the experience that you will have. So try to figure out what's best for you, or at least, the option that you think you can live with most easily, given all the risks associated with all of the options. Good luck with your decision!

"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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Jun 20, 2019 10:31AM Spoonie77 wrote:

Thank you Ruthbru for sharing that post by Beesie. I had not seen it before and found it very informative. Even at this late date. :) Bookmarked and saving it for the future, should I ever need to choose again, and to pass it on to others if they are struggling in their decision. Just another reason why I love this community, so much support and information.

Wishing your wife peace and confidence in whatever her decision ends up being, Akhan.

Life long "Spoonie". Entered the BC world @41 w/ DX of IDC. DXd @ 42 w/ MS. Treatment: LX/SLNB/RADs. Plan A: 5mg Tamoxifen = 0 QOL. Plan B: Zoladex = Confirmed Allergy. Plan C: Unknown, the journey continues. PS: Not a doctor, just a curious Googler. Dx 7/20/2018, IDC, Left, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 8/30/2018, DCIS, Left, 1cm, Stage 0, Grade 2 Surgery 8/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/1/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 3/30/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/2/2019 Zoladex (goserelin)
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Jun 20, 2019 11:56AM - edited Jun 20, 2019 11:58AM by Lisey

Hi All.. I just wanted to clarify that BCO has an article that actually shows there is a longterm survival rate difference for MX vs. Lumpectomy If the patient is YOUNGER. That means, if the patient is young, then MX does increase survival and recurrence rates. I'll find the article and edit it here to repost.

Here it is: https://www.breastcancer.org/research-news/best-su...

It makes sense. I had DENSE breasts and I'm sure if I had only had Lumpectomy, at some point more cells would have turned on me. Density is a factor that increases the odds of BC 5x. So there are many factors to decide LX or MX/BMX.

IF you are young

If your breasts are dense

Type of BC (ILC has been known to be sneaky and pop up quickly)

etc etc.

Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/6/2016 Mastectomy: Left, Right Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 20, 2019 12:07PM - edited Jun 20, 2019 12:09PM by Spoonie77

Lisey thanks for that link. I wish my team had told me about this study while I was deciding on my options, it may have changed my mind. Sobering study IMO.

"After 20 years, overall local recurrence rates (the cancer coming back in the same area of the breast where it was originally diagnosed) were:

        • 18% for women who had lumpectomy (66 women)
        • 6.7% for women who had mastectomy (55 women)


When the researchers looked at the women by age groups, there were some striking differences in local recurrence rates:

        • women 45 or younger who had lumpectomy had a 25% recurrence rate, compared to 11% for women older than 45 who had lumpectomy
        • women 45 or younger who had mastectomy had a 13% recurrence rate, compared to 3% for women older than 45 who had mastectomy


So women 45 and younger diagnosed with early-stage breast cancer had a higher risk of recurrence compared to older women, no matter which surgery they had.


Younger women who had lumpectomy were 60% to 70% more likely to die from breast cancer 20 years after diagnosis compared to women older than 45 who had lumpectomy. Also, younger women who had a local recurrence were twice as likely to have a distant metastasis -- the cancer coming back in a part of the body away from the breast."

(*the article does note that there are a few limitations inherent in the study*)

Life long "Spoonie". Entered the BC world @41 w/ DX of IDC. DXd @ 42 w/ MS. Treatment: LX/SLNB/RADs. Plan A: 5mg Tamoxifen = 0 QOL. Plan B: Zoladex = Confirmed Allergy. Plan C: Unknown, the journey continues. PS: Not a doctor, just a curious Googler. Dx 7/20/2018, IDC, Left, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 8/30/2018, DCIS, Left, 1cm, Stage 0, Grade 2 Surgery 8/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/1/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 3/30/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/2/2019 Zoladex (goserelin)
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Jun 20, 2019 01:47PM Lisey wrote:

The study was small.... so there's that. But it still makes sense that if you got one tumor from your breast, the odds are over years and decades another will pop up given genetics we are just now understanding about our bodies. I just wish people would be careful when saying there is no difference in risks between LX and MX, because us younger folks DO have an advantage to get an MX if we plan on living decades. :) All of us can get a recurrence, but given my density and super huge breasts, I'm just glad they are gone.

Also, just another note (having recently gone through this)… Studies are now showing that 70% of all Ovarian cancers start in the tubes, not the ovaries. When I got a hysterectomy, I kept my ovaries but removed my tubes. It gives me better odds of not getting ovarian cancer, all the while staying young and not going into menopause. My surgeon told me her surgery group just started the practice of removing tubes and uterus only last year. It's something to consider for us younger ones on Tamoxifen and dealing with uterine lining issues. Keep your ovaries, lose your tubes. :)

Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/6/2016 Mastectomy: Left, Right Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 20, 2019 09:08PM - edited Jun 20, 2019 09:10PM by Spoonie77

I tried googling to see if there was more info or other studies. I'm not sure if this reference in this paper to the study you mentioned, Lisey, or if it's a different one. But, the info presented seems to say a similar message. Just thought I'd pass it along in case it's helpful to anyone else on the boards.

Comparison of recurrence and survival rates after breast-conserving therapy and mastectomy in young women with breast cancer

" In the interim, breast-conserving therapy is not contraindicated in young women (less than 40 years of age) and can be used cautiously; however, such women should be advised of the lack of unequivocal data proving that survival is equivalent to that with mastectomy in their age group."


3.2.4. EBCTCG

"Most recently, the Early Breast Cancer Trialists' Collaborative Group updated their collaborative meta-analysis with further follow-up, subsequently increasing the total number of women analyzed by about 50% to 10,801 individual patients with a median follow-up of 9.5 years12. However, the main emphasis of their analysis was any first recurrence, whether it was locoregional or distant. (They had previously focused on time to locoregional recurrence.)

The 10-year risk of any first recurrence was reduced from 35.0% in women with bct only to 19.3% in women allocated to radiotherapy, corresponding to an absolute risk reduction of 15.7% (2p < 0.00001). The analysis was also stratified by age, either in 5 groups (<40, 40–49, 50–59, 60–69, and 70+ years), or when data were subdivided by other factors, in 2 groups (<50 and 50+ years). The characteristics that were independently predictive of the absolute risk of recurrence or of the absolute risk reduction with radiotherapy were included in a model to show how 10-year recurrence risks with and without radiotherapy in the trials depended on age, grade, estrogen receptor status, tamoxifen, and extent of surgery. Compared with older women and women with low-grade tumours, younger women and those with high-grade tumours had substantially larger absolute recurrence risks without radiotherapy and substantially larger absolute risk reductions with radiotherapy. Furthermore, women less than 40 years of age treated with bctplus radiotherapy had a higher relapse rate at any site: 36% at 10 years compared with 21% for women in their 40s. Even with boost doses, as described in the eortc boost study, the 10-year relapse rate was 13% in women less than 40 years of age compared with 4.9% in women in their 50s13."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3851357/

Life long "Spoonie". Entered the BC world @41 w/ DX of IDC. DXd @ 42 w/ MS. Treatment: LX/SLNB/RADs. Plan A: 5mg Tamoxifen = 0 QOL. Plan B: Zoladex = Confirmed Allergy. Plan C: Unknown, the journey continues. PS: Not a doctor, just a curious Googler. Dx 7/20/2018, IDC, Left, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 8/30/2018, DCIS, Left, 1cm, Stage 0, Grade 2 Surgery 8/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/1/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 3/30/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/2/2019 Zoladex (goserelin)
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Jun 21, 2019 09:17AM Lisey wrote:

Thanks for that Spoonie. Whenever I see women saying there is no difference in relapse/survival rates between LX and MX, I try to jump in and correct them. To me, there is an obvious difference for young women, and all the studies previously were on an older demographic who didn't have the decades left for the new cancer to form. I just wish the doctors would explain this to those 40 and under but the older studies just are stuck in people's minds.

Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/6/2016 Mastectomy: Left, Right Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 21, 2019 01:47PM Meow13 wrote:

I was really upset when told I needed a mastectomy. But afterwards I was really thankful to get all the information the pathology provided. After the results I actually could have had 2 lumpectomies but there was no way to be sure of it. I was dealing with one tumor classified as ILC. But the ILC appeared more like IDC on its geometry it could have been one large tumor instead of 2.

My DIEP reconstruction was a total success so it left me very happy. My advice is to spemd the extra effort to check out the breast surgeon and the plastic surgeon.

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Jul 11, 2019 04:25PM msphil wrote:

so sorry bout your wife but glad you found us here. I was 42 when found the lump as we were preparing for our 2nd marriages God sent man of my dreams and then this so I thought bout lumpectomy but fiance at time and I were concerned bout recurrence so I went for mastectomy. Had it done drains etc had reconstruction expander in one filling and my body rejected it with 104 fever rushed to E R removed it. Went for prothesis in bras since. For INSPIRATION for you your wife and all here I am this yr a 25 yr Survivor Praise God my faith got me thru with HOPE and Positive thoughts and such a amazing now husband with me every step of this journey. Oh I had my cries but decided to fight with Positive thoughts that I would get thru this trial. msphil idc stage2 0/3 nodes 3mo chemo adriamycin cytoxin 5fU before and after surgery Lmast got married then 7wks rads and 5yrs on Tamoxifen.

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Jul 21, 2019 04:36AM runor wrote:

I am surprised, Akhan, that your wife was scheduled for surgery without yet having made a clear decision what surgery she was having.

I was told CLEARLY by my surgeon to give it a good amount of thought to what surgery I would have (lump or mast) and to let her know well in advance of the surgery date, because, according to my surgeon, setting up an operating room for a lumpectomy and setting up for a mastectomy are two different things and if I roll in there having asked for one and then suddenly change my mind at that moment, all hell will break loose in the OR. The OR does not operate well with surprises. So how your wife was a day out of surgery with no clear plan on what choice she would make is puzzling to me.

I hope all went well.

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 21, 2019 04:40AM - edited Jul 21, 2019 04:40AM by runor

This Post was deleted by runor.
Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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