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All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: Lumpectomy or Mastectomy Decision

Topic: Lumpectomy or Mastectomy Decision

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

Posted on: Aug 12, 2016 05:16PM

Elaine555 wrote:

I am new to this site and just recently diagnosed with DCIS, stage 0 (ER+ / PR-), in the left breast. I had an excisional biopsy done on 7/12/16. I am waiting for the results of my breast MRI and genetic testing. The reason for the genetic testing is that my sister passed away from breast cancer (she had undergone a lumpectomy, chemo, radiation & took Tamoxifen). She's the only one in my family who had a breast cancer diagnosis and another sister had hyperplasia and now my diagnosis. I know I need to undergo another surgery because the margins are not clear from the first surgery. I'm trying to decide between a lumpectomy vs. a mastectomy on my one side. I know things may change depending on my test results. I'm conflicted on which way to go. If I go the conservative method, I will still need to undergo radiation and I hate the thought that I'm always going to be worrying about this every time I have to go for a follow-up appointment. If I go for the mastectomy, I don't know if I'm overreacting to the situation based upon my sister's passing, but at least I wouldn't need radiation and would lower the chances of recurrence. And this is considered a major surgery and I'm not sure how I'll feel about it afterwards.

I'd like to hear from others who may have been in a similar situation. Any advice or thoughts would be much appreciated.

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Aug 12, 2016 09:56PM Moderators wrote:

Hi Elaine555-

We want to welcome you to our community here at BCO. We hope you find the support and advice you're looking for!

We also wanted to direct you to our Surgery forum, which you can find here: https://community.breastcancer.org/forum/91. There's a lot of great info there from other members who've been in your shoes, and you may find some of it helpful when deciding on which surgery is right for you.

We hope this helps!

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Aug 12, 2016 10:04PM - edited Aug 19, 2016 11:29PM by ChiSandy

I had my genetic testing after lumpectomy & OncotypeDX but before radiation. Had the results come back positive for either of the BRCA mutations, I'd have gone for BMX, no question.

Why bilateral & not uni? They don’t make prostheses and bras to fit the size of my breasts; a uni would have meant either reduction on the healthy one or BMX. Recon on the R and reduction on the L would have had a low chance of achieving symmetry--and if I opted to go flat on the R and reduce the L, I would have to wait for the L to “settle in” before determining what size prosthesis & bra to get. The course I chose, with a lumpectomy that doesn’t show & didn’t require oncoplasty on one breast or the other, was the easiest on my body. And it’s not irreversible. (Well, I suppose you can’t put the tumor back...) Winking

If I get a recurrence or a new primary in my R, unless it’s completely outside the previous field of radiation, I would have to go for a mastectomy, since you can’t radiate the same tissue twice.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Aug 12, 2016 10:23PM fireheart438 wrote:

Welcome to the discussion boards, Elaine! I faced a situation somewhat similar to yours, though I did not lose a sister to BC. About 3 years ago I had a lumpectomy with a hyperplasia diagnosis. Last year as I was actually going through another major issue (I had surgery last October for a benign brain tumor), my mammo showed some changes. I got the needle biopsy but was unable to proceed with the breast surgeon until December. She recommended a lumpectomy and the diagnosis came back DCIS.

My immediate response was "when do we cut these things off?" I didn't think of myself as overreacting. I was honestly wondering why not. I don't intend to have any children I will nurse at my age (just turned 52). I am not defined by my breasts. It's who I am, not what I have, that matters. My husband was in complete support of any decision. My surgeon, however, thought it was an over reaction and recommended a relump and rads. I got a 2nd opinion. Loved that doc because she spoke openly with be about OPTIONS. While she told me that the relump and rads was a reasonable course of action, I did have mastectomy as a personal choice. She made me feel empowered and respected.

After much prayer, inner turmoil, and discussion with my hubby I opted for the less invasive choice. I felt decent about the radiation, and the oncologist assured me that if the side effects of Tamoxifen were too much I could stop. But there was always that nagging wonder about if that was right for me.

Then the relump...the doctor still didn't think the margins were clean enough. I read the path report very closely on my own and just didn't like some of what I saw. It seemed different from the first one. More necrosis. Larger areas of DCIS. I was DONE! I found a plastic surgeon based out of the hospital where the 2nd opinion surgeon practiced and I forged ahead with the doctor who had valued what I thought. This was not about appearance, it was about my life.

The pathology from my BMX (I did both so that the reconstructed breasts could match better and for peace of mind) was a surprise. Despite never seeing it on films or in pathology, they found an area of Stage 1. If I had gone the less invasive route we may not have found this and not been able to treat it. Or we may have, and I would have then had more surgery.

When the surgeon told me about this pathology, she confirmed I had made the right decision. But even if it had been "just DCIS", I would have had no regrets.

I know that it is scary to think about what they might find. But for me, knowing and dealing with it are much better than not knowing and this disease perhaps progressing. I do not have connections with my father's side of the family. So I don't truly know all my family history. That was a factor for me.

I despise having had to make a choice. But I'm confident that whatever the pathology had shown this was the right choice for me. I haven't looked back since the day I said "I'm getting a mastectomy", and I don't think I ever will.

Wishing you the best with your inner search to find what is right for you. Remember that it is YOUR choice. Trust your judgement, intuition, and love for yourself. Don't let a doctor or any other human being guilt or pressure you into any decision. Make the one that brings you peace.

Sorry for rambling on. I will be praying for you.

Surgery 7/12/2016 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 7/13/2016, IDC, Right, 1cm, Stage IA, 0/1 nodes, ER+/PR+, HER2+ Chemotherapy 8/11/2016 Taxol (paclitaxel) Targeted Therapy 8/11/2016 Herceptin (trastuzumab)
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Aug 12, 2016 10:23PM - edited Aug 12, 2016 10:47PM by Beesie

Elaine, here is a long thread in the DCIS forum that specifically addresses your question. There are some differences between DCIS and invasive cancer when it comes to this decision, and since most of those posting in this thread had a DCIS diagnosis, the comments will be particularly relevant to your situation:

Topic: lumpectomy vs mastectomy - why did you choose your route?

On the 1st page of that thread you will find my June 13th 2013 post detailing a long list of considerations and pros/cons for those making the decision between a lumpectomy and a mastectomy. There is another version of this list of considerations you might find posted in "Lumpectomy vs. Mastectomy" threads in the Just Diagnosed or Surgery forums of this board; the version that you will find here in the DCIS thread is a bit different because I wrote it specifically for those who have DCIS, addressing some of the considerations that are different for those who have DCIS vs. an invasive cancer (the issue of an SNB, for example, or the role of post-surgical hormone therapy).

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 14, 2016 01:16AM SallyAnneS wrote:

I'm in a very similar situation only I know I'm BRCA1 so I know my risk, even without the DCIS, is fairly high. But I'm 62, so my risk is lower than a younger person (for my remaining lifetime -- about 20%). My mother had late-onset BC and died from it. I think I have the same thing but (fingers crossed) have caught it in time. DCIS can become invasive with time and mine is on the high end.

I'm pretty sure I've decided on a mastectomy on the DCIS side only for the reason you mentioned. I just don't want to wait for a recurrence and I don't want the radiation either. I'm willing to accept the increased risk on my remaining healthy breast at least for now.

Hope that helps! You'll be better informed after you have your genetic test results.

Dx 5/13/2016, DCIS, Right, 4cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 7/28/2016 Prophylactic ovary removal Surgery 9/15/2016 Lymph node removal: Sentinel; Mastectomy: Right
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Aug 18, 2016 10:35AM myToyStory2 wrote:

There is no "right answer" and that's probably the hardest part of making this life-changing decision! I opted for a BMX with reconstruction due to a strong family history on my maternal side. My mom, her sister, their mother, and several other female relatives had BC at young ages. I tested negative for the BRCA genes, which was a bit of a surprise, but still decided to be proactive. After my dx this spring (I'm 43) my aunt agreed to do the genetic testing, and she tested positive for BRCA 1. She had her ovaries removed last month as a precaution and cancer was discovered in her Fallopian tubes. She begins chemo soon. This has prompted my mother to get tested for the gene - and we all suspect she'll be a carrier, too. So - did I need to have the BMX? With this new information about my family and learning I don't share the same genetic makeup as them....maybe not. But instead I prefer to think that my family's history of cancer caused me to pay attention to my breast health for many years, and my decision had already been made. No regrets. Best wishes!

Dx 3/11/2016, DCIS, Left, Stage 0, ER+/PR+ Surgery 5/16/2016 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/26/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 19, 2016 08:50AM fireheart438 wrote:

MyToyStory2 says it all with the sentence, "No regrets." How and when to treat BC is a very individual, personal decision. You have to make the one that is right for YOU. Not for your doctor, your family, or anyone else. You may have a very similar diagnosis and situation to someone else and make a totally different choice. But if it is YOUR choice and you feel right about it, then it is the best choice. 

Surgery 7/12/2016 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 7/13/2016, IDC, Right, 1cm, Stage IA, 0/1 nodes, ER+/PR+, HER2+ Chemotherapy 8/11/2016 Taxol (paclitaxel) Targeted Therapy 8/11/2016 Herceptin (trastuzumab)
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Aug 19, 2016 09:21AM Ingerp wrote:

I agree with fireheart. You just need to do whatever research/contemplation/. . . to make the decision and then not look back. We all have our own tendencies when it comes to conservative vs. aggressive treatment, but most important is to be comfortable with your decision and medical team.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/22/2016 Lumpectomy Radiation Therapy 5/17/2016 Whole-breast: Breast
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Aug 19, 2016 08:54PM AmieM wrote:

Hello Elaine555,

I was in the same situation in May 2016 when I was diagnosed with DCIS on the right breast. I am 50 years old. No family history, no risk factors and I am very athletic. I did not know what to do. As others mention, there is no right answer. I struggled a lot with my decision. All the doctors advised me to have lumpectomy. I decided to have single mastectomy on the DCIS side. Tamoxifen is not an answer for me, because I have Factor V Leiden and I am at risk of developing blood clots. My surgery was successful, lymph nodes clear. I recovered very fast. I have a tissue expander in place. But now I am facing another decision, how to match my natural breast. I am small, 32-34 B bra size. My surgeon offered to place a small implant in the natural breast to match the reconstructed one. I am schedule for surgery in September and I am worried: how about if the implant in the natural breast will interfere with the breast cancer screening? How about if the implant on the healthy breast will rupture during a mammogram? I regret that I did not have bilateral mastectomy. I felt that I was rushed to make a decision and everybody made me think that I was overreacting. Now, before finishing the reconstruction I am again confused and anxious.

You have to do what makes sense to you. Single mastectomy made sense to me in May. But, I didn't think all the way to reconstruction and I didn't take in consideration my body type. Now I doubt myself again. Good luck with your decision!

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Aug 19, 2016 11:02PM fireheart438 wrote:

Amie - Sorry to hear you are struggling with your decision. You made the best choice you could with the info you had at the time. Have you considered going for a prophylactic mastectomy on the left? You'd need to investigate insurance coverage, but if it will give you more peace of mind then it is probably worth it. I don't think there are any time limits for having expanders in place. So if you put off the implant to go through the reconstruction process on the second side, that might not be bad. In the end you want to be comfortable and at peace with your decision. Wishing you the best as you consider what you need to do.

Surgery 7/12/2016 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 7/13/2016, IDC, Right, 1cm, Stage IA, 0/1 nodes, ER+/PR+, HER2+ Chemotherapy 8/11/2016 Taxol (paclitaxel) Targeted Therapy 8/11/2016 Herceptin (trastuzumab)
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Aug 19, 2016 11:17PM Meow13 wrote:

Amie, I think you could have ultrasound or mri screening instead of mammogram.

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Aug 28, 2016 12:00AM Elaine555 wrote:

I wanted to provide an update on my situation. I received the results of my genetics test and they are negative for the BRCA gene. And the breast MRI didn't show anything new, no new disease. So I'm back to my original dilemma -- a lumpectomy or a mastectomy? I'm learning towards doing a lumpectomy, but will have to do radiation. But first I'm going to consult with the radiologist and consult with an oncologist to get a second opinion regarding surgery. I believe they are not going to remove any lymph nodes with the lumpectomy. Is this common?

I know that I'm the only one who can make the decision regarding which surgery to have. Did anyone have a mastectomy wish that they went with a lumpectomy instead?

If DCIS recurs, is it easily detected?

Any thoughts or advice, or anything else I should consider, would be appreciated.

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Aug 28, 2016 08:35AM fireheart438 wrote:

Elaine555 - My original dx was DCIS and my plan a lumpectomy & rads. Having dense, fibrous breasts my BC was NOT easily detected. Not on routine screening, not with needle local bx, not with lumpectomy. Only when I went with the BMX did the surgeon find my invasive BC. Recovering from BMX and my TEplacement has not always been a picnic, but it's not been torture either. I like my new look from the reconstruction and feel relieved to know we've removed the BC cells. Yes, I am doing chemo due to the pathology. But that too is doable. Not fun. Doable. No regret about choosing BMX here. In fact, I took some pics the night before surgery and when I look back at my real breasts I don't miss their droopiness. That has been the decision that was right for me and I am totally at peace with it in spite of any of the struggles involved. Wishing you the best as you make the decision that is best for you.

Surgery 7/12/2016 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 7/13/2016, IDC, Right, 1cm, Stage IA, 0/1 nodes, ER+/PR+, HER2+ Chemotherapy 8/11/2016 Taxol (paclitaxel) Targeted Therapy 8/11/2016 Herceptin (trastuzumab)
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Aug 28, 2016 08:44AM GoofyFoot wrote:

Hi Elaine,

Yes, lymph nodes are not removed with a lumpectomy for DCIS, because DCIS by definition is contained in the duct; it is not invasive so has not spread outside the duct (and traveled to the lymph nodes). You indicate that you already had one lumpectomy (the excisional biopsy), and they did not remove lymph nodes at that time either so the second lumpectomy will involve going in the same incision and removing additional tissue to try and get a clear margin. If that also does not get a clear margin, you could face an additional lumpectomy or re-think your choice (again) and have a mastectomy at that point.

You do not indicate the grade of your DCIS or the size and position of your DCIS. Those can influence your decision too and the consult with the oncologist should help you to decide what you want to do. Is the DCIS close to the chest wall, does it cover a large area, is it grade 3 (more aggressive), do you have very dense breasts making it difficult to read your mammograms. Ask your oncologist how those factors should make a difference in your decision.

As far as how easy it is to detect a recurrence of DCIS - they will be looking for the same small bright white spots on your mammogram that were seen with your first diagnosis - they will see them in a fine, linear, branching pattern, or a cluster of pleomorphic microcalcifications. If you have the lumpectomy, you will have regular mammograms and any time they see these types of microcalcifications, in those patterns, they are going to recommend another biopsy to check for DCIS. I had a baseline mammogram in January, 3 months after the completion of radiation, and then a screening mammogram in June, 5 months later, which showed new microcalcifications in an area of prior non-suspicious microcalcifications. I had another code needle biopsy and it was not DCIS, but it was a very stressful 3 weeks because getting DCIS back that quickly, right after radiation, is unheard of, and would have signalled a really aggressive cancer and would have required a mastectomy because I would have failed conservative treatment.

Again, everything is based on how you personally feel about the various risks. I personally did not want to go through a major surgery (I would have chosen bilateral DIEP flap) and I personally would always worry that there could have been undetected cancer cells that had become invasive near the chest wall tissue left behind during a mastectomy and would no longer be detected via mammograms since I wouldn't have those after a mastectomy. But now I could be destined to have multiple biopsies throughout my life, with multiple high-stress waits to get the all clear results, and I would end up with a mastectomy if it returns (and would have needlessly subjected myself to radiation).

To ask if anyone had a mastectomy and regretted it versus a lumpectomy, I would think of course some will say that. It is a major surgery and there can be major complications. Or it can go smoothly but it still has a recovery time of a few to several weeks, depending on the type you chose to have. But no one can be sure what would have happened either way. We can look at statistics gathered in studies and try to see where best our situation fits those stats, but in the end, the decision is a personal one and we can only hope to minimize our regrets.

I wish you the best in your decision process; it is so hard to decide what we want to put our bodies through, especially when we "feel healthy" and a microscopic exam tells us otherwise and that we then choose between radiating our breast, or removing it. Neither one is a choice we want to make.

Dx 6/2015, DCIS, Right, Stage 0, Grade 3, ER-/PR- Surgery 7/21/2015 Lumpectomy: Right Surgery 7/30/2015 Lumpectomy: Right Radiation Therapy 9/7/2015 Whole-breast: Breast
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Sep 4, 2016 01:30PM Bluebirdgirl wrote:

As soon as I was told I had DCIS, and the nurse said that means it's contained, and others "if you are going to get cancer, that's the kind you want," I thought I don't care if it's "the good kind",I knew instantly that I would get a BMX. I am only 49 years old. My mom had IDC at 57. My DCIS was grade 3, comedo necrosis, deep behind my nippe, near my chest wall. Scariest thing I have ever done in my life. I'm sure everyone on this board knows the feeling. It really boiled down to I want rid of this thing and I don't want to constantly worry about my other breast too, suspicious mammos, biopsies, more mammos. No. I do not regret my decision, despite the pain and the reconstruction that lies ahead. I am in control now, not the cancer. Good luck to you in your journey.

“Man can live about forty days without food, about three days without water, about eight minutes without air, but only for one second without hope” Dx 7/28/2016, DCIS, Right, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/25/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/20/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 28, 2016 09:05AM yogadedra wrote:

I am so tired of people questioning my decision to have DMX. I am also sick of doctors and other people saying oh its contained; we can just remove that lump and radiate your breast. No thank you its my body and I want both removed and reconstruction done. Peace of mind will save hours of worry for me thus improving MY QUALITY of life! Surgery is schedule Oct 20, 2016.

Dx 9/1/2016, DCIS, Left, Stage 0, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 28, 2016 06:53PM radaro wrote:

Any decision we make that brings peace of mind is a good decision. I had prophylactic bilateral NSM on July 26 2016 and scheduled for exchange on Oct 25. I was so grateful to have a choice. The surgery with expanders has been a very positive experience so far. Im happy to be on here with you all. I hope implants are relatively safe and am a bit scared of them but grateful . Any feedback on implant/exchange would be appreciated. Im a nurse-I didnt see myself becoming a patient. Hardest and strongest choice Ive had to make. Big hug to all .

Dx 3/29/2016, DCIS, Right, 1cm, Stage 0, Grade 3, ER- Surgery 5/5/2016 Lumpectomy: Right Surgery 7/26/2016 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/24/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 28, 2016 06:58PM dragonsnake wrote:

Please read my signature, DX, and treatment. I opted for BMX without reconstruction after two lumpectomies failed to produce clean margins. SNB on cancerous side only.

Diagnosed @49 over a routine 3D mammogram;15/4/2016 DCIS 3cm med to high grade, comedo necrosis; ER+/PR+ , two lumpectomies failed to achieve clean margins, about 9 cm DCIS removed; 7/13/2016 BMX, SNB left 0/2 Dx 5/23/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER+/PR+ Surgery 5/23/2016 Lumpectomy Surgery 6/2/2016 Lumpectomy Surgery 7/13/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right
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Sep 28, 2016 07:20PM yogadedra wrote:

Radaro,

I am a nurse too, a hospice nurse in fact. I have always been so healthy and definitely am not use to being the patient either.

Dx 9/1/2016, DCIS, Left, Stage 0, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 28, 2016 08:15PM radaro wrote:

Yogadedra

I was told the same things as you were. "No one would recommend mastectomy and no one would do it." I think it might be the nurse in us. I thought Im winning the lottery right here by hearing in situ-and clean margins. I was afraid I would not hear that again another day. I went to the US in fact where I could pay and let me assure you once I made my plans clear every doctor and nurse here and there understood why. I dont think it was the path I chose that they were condoning-I think it was the fact that I chose with my gut. Im glad I did. I can live with my decision and not in fear. Are you gettting good support for your decision now and are you feeling confident in your team and your decision. Medical professionals understand why medical professionals are aggressive in their approach. As a hospice nurse I can only imagine how you might feel. Im paediatrics- always feeling well and healthy. big hug

Dx 3/29/2016, DCIS, Right, 1cm, Stage 0, Grade 3, ER- Surgery 5/5/2016 Lumpectomy: Right Surgery 7/26/2016 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/24/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 28, 2016 09:01PM radaro wrote:

Dragonsnake- How are you feeling post mastectomy? Our time frame both dx and surgeries are very similar! Im lucky so far but if the implant part of things causes to much grief or fear-Ill do without :) How are you? And only 49...for my 50. It was a brutal gift- but you're healthy ahead of 50 and Ill have a fearless 51. Im so happy to be on here at last. Thank you. Birds of a feather...doesnt seem real but it is/was. big hug

Dx 3/29/2016, DCIS, Right, 1cm, Stage 0, Grade 3, ER- Surgery 5/5/2016 Lumpectomy: Right Surgery 7/26/2016 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/24/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 28, 2016 10:44PM dragonsnake wrote:

Radaro,  thank you for caring. I had BMX in July, no reconstruction,  and the SNB.  The SNB side is still occasionally numb under the armpit, with a feeling of a pillow under and near the armpit. I had the same feeling on the prophylactic side for about a month or more, no SNB on this side. Also have some burning and pain in the chest and occasionally  pins-and-needles feeling   in the  arm on the cancerous side. Still cannot sleep on my stomach - chest pain, but can sleep on the prophylactic side hugging a pillow.

I hope things get better for you - it really needs time to heal.

Diagnosed @49 over a routine 3D mammogram;15/4/2016 DCIS 3cm med to high grade, comedo necrosis; ER+/PR+ , two lumpectomies failed to achieve clean margins, about 9 cm DCIS removed; 7/13/2016 BMX, SNB left 0/2 Dx 5/23/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER+/PR+ Surgery 5/23/2016 Lumpectomy Surgery 6/2/2016 Lumpectomy Surgery 7/13/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right
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Sep 28, 2016 10:52PM yogadedra wrote:

Radaro,

     I have family support!  At first my husband thought I was being drastic with the choice of DMX.   After he heard everything involved c only lump removal and the radiation et possibly getting again et maybe on other side and drug therapy se he totally understands now.  I have a great surgeon et PS that I fell confident with!  

Dx 9/1/2016, DCIS, Left, Stage 0, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 28, 2016 11:44PM ChiSandy wrote:

My BFF was dx’ed with large (6cm) and multifocal grade 3 ER-/PR- DCIS, behind the nipple. First thing out of her mouth was “get rid of ‘em both.” Even the “healthy” one had ADH. As she is 70, widowed (and her late DH was the love of her life so she doesn’t want to date again) and hasn’t worn a bra in 30 yrs., she also declined reconstruction.

OTOH, I had IDC, small (1.3cm), “high & outside,” ER+/PR+, grade 2. I have large and non-dense breasts (to put it mildly—38 I), so UMX would have resulted in major asymmetry because they don’t make prostheses, implants or mastectomy bras that big, so I’d have also needed to have the healthy breast reduced (another major surgery) or removed; and when I learned that the survival rate for lumpectomy + rads is exactly the same as for MX (uni or bi-lateral), the difference in recurrence (6% for lx+rads vs. 3% for MX) wasn’t enough for me to even consider anything but breast-conserving surgery. I was 64 at the time, married 44 yrs. (65 & 45 now, respectively). I hate surgery. I hate the risk of anesthesia. I hate the risk of infection. I had just seen my husband (who is a doctor and knows all the risks of surgery) go through a perforated cecum from a botched colonoscopy, a hemicolectomy and a herniorrhaphy all within five weeks. So I was glad to know that UMX or BMX was overkill for me. I figured that if a lumpy isn’t enough, it’s always possible to go back and do a MX. But once a breast is gone, it’s gone—and reconstruction is also major surgery (in many cases, far more major than the mastectomy).

For me “peace of mind” was a red herring—I know plenty of women who had mastectomies and still had recurrences. But if my cancer had been larger, more aggressive, located more centrally, and my breasts dense and smaller, I would probably have opted for MX. Of course, if I do get a local recurrence, I would have no choice but MX because you can’t irradiate the same tissues twice—if reconstructed, I’d have to have the healthy breast reduced; if not, I would need BMX for symmetry for the reasons outlined above.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Sep 29, 2016 12:43PM radaro wrote:

Yogadedra-I am so glad that you have both family support and confidence in your ps! That makes all the difference. :)


Dx 3/29/2016, DCIS, Right, 1cm, Stage 0, Grade 3, ER- Surgery 5/5/2016 Lumpectomy: Right Surgery 7/26/2016 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/24/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 29, 2016 12:52PM radaro wrote:

ChiSandy-I totally hear you and good for you for going with your gut. Surgery is a risk taking thing . We play our best hand and hope beyond hope that we will have heard the last of BC with that decision. To have to make any choice is a drag-but to have a choice at all makes us feel lucky . I wish you and your husband some peace and good health from here on :)

Dx 3/29/2016, DCIS, Right, 1cm, Stage 0, Grade 3, ER- Surgery 5/5/2016 Lumpectomy: Right Surgery 7/26/2016 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/24/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 29, 2016 01:00PM radaro wrote:

dragonsnake-Thank you for caring too.

The sleeping thing and the healing thing are coming along nicely. The numbness and pins and needles are same for me and thats with no SNB. Its nice to be able to relate to others. The new normal :) I hope you continue to feel better for you as well. Its not even three months -so I think we are troopers :)

Dx 3/29/2016, DCIS, Right, 1cm, Stage 0, Grade 3, ER- Surgery 5/5/2016 Lumpectomy: Right Surgery 7/26/2016 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/24/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 29, 2016 01:06PM pamdawn12 wrote:

Hi Elaine,

I am new to the discussion boards and was just searching topics and saw this and it felt like this is the one I should reply to.

I chose a lumpectomy because it was the only thing I could control. I looked at the calendar and counted the days of when this was and when that was and wanted to make sure I could party on New Years eve when Radiation and Chemo were done. The only family that had breast cancer were 2 - 2nd cousins on my moms side and to this day, I still wonder, why me, why did I get it.

I am glad to say I am a Survivor and have had no re-occurences and I recently had a mammogram and I was so frickin nervous you would have thought it was my 3rd one, when in all actuality it was probably my 20th??

Anyhoo, congratulations to you in being courageous enough to even post here and share. You have every right to be fearful, scared, nervous and many other emotions.

Sending positive and loving thoughts your way. Good luck with everything. The New Normal does take some getting use to, but I pray it will all work out.

Have a great day!


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Jun 17, 2017 06:22PM Elaine555 wrote:

Hi, This is Elaine. I thought I would provide an update on my situation. I decided to undergo a second lumpectomy in September rather than a mastectomy. I really don't have a good reason as to why. Either decision was going to be difficult. I guess my main reason would be that I thought that since I didn't have invasive disease, that I should go with the more conservative treatment, and I needed to make a timely decision one way or another. I also went through radiation therapy for 30 days last fall, and I handled the treatment okay. And now I'm undergoing hormone therapy. I began taking Anastrozole in early March, and I'll be taking this medication for 5 years I believe. I'm adapting well to the medication except for very minor side effects. So overall I'm hanging in there and doing okay. I did get nervous when I went for a recent mammogram and ultrasound.

I did have another unrelated medical issue though. I was recently diagnosed with melanoma in situ on my back and had to have 3 moles/areas removed on my skin (2 on my back and 1 on my left breast, the same breast that I had the DCIS in). This was another setback for me as I really enjoy sitting in the sun and being in the sun. And now I have to adjust to avoiding the sun and taking precautions when I'm out in it. Has anyone else been in a similar situation with a similar diagnosis? Can you please provide some tips and advice?

My prayers to everyone in the community. Stay strong and hang in there.

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Jun 17, 2017 08:01PM - edited Jun 17, 2017 08:01PM by ChiSandy

Elaine, sorry to hear you needed a second lumpectomy (was it a new primary tumor or a recurrence?) & had melanoma. Glad it was in situ. I had a “highly atypical dysplastic nevus" (the derm called it a “pre-melanoma") removed from my back last summer. IMHO, being in the sun is overrated. But I try to wear long sleeves when I can stand it (covers my flabby upper arms) and never go out in daylight without at least SPF 30 on my face & lips and 50 on my arms, legs & chest if they're exposed. I should wear a hat, but I keep misplacing them. Pain in the butt, but so are skin biopsies.

When I was younger, I used to sunbathe with baby oil & iodine (or that orange Ban de Soleil goopy gel that always seemed to be a sand-magnet) and a sun reflector. In the 1950s and 60s, sunshine was considered beneficial, and a tan was the symbol of robust health. Nobody knew about the ozone layer back then (or at least it was intact). I am also very pale (despite dark hazel eyes and having had brown hair before the gray kicked in and so did the blonde-bleaching gene), and I refused to believe that a tan was impossible (and now even inadvisable) for me. I realize that with my coloring, any tan I could get would have looked like a cross between jaundice and sallowness.

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

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