lumpectomy vs mastectomy - why did you choose your route?
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Olaf - glad things are going well for you and you are comfortable with your choices. I just want other women to know that a mastectomy does not always mean NO radiation or Tamoxifen. Glad this has been the case for you. Do your research first ladies and be well informed for all decisions.
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Hi ladies...sorry i havent been on here giving an update. My MRI was postponed several times as I kept skipping my cycles. I finally had it yesterday. Thew news today is that they DID find something in my non radiated left side
I will be having an MRI guided biopsy in a couple weeks when my partner is home and able to be with me. Dr. didnt say if it was calcifications or an actual spot/lump that they saw. Im claustrophobic and the MRI yesterday was uncomfortable and the valium did nothing for me. I saw on youtube how they do this new test....I may need to be knocked out in order to get me all the way in that MRI tube.....but with my sleep apnea I doubt they will do that SO looks like i may be on the cancer coaster again this summer....my gut feeling for months was that they would find something on MRI.....but Im still glad I pushed to have it done.0 -
hi everyone, so relieved to read everyone's stories. I'm new to this site,, 50 years young, healthy & athletic.
wanted to ask if anyone switched surgeons in between lumpectomy and re-excision.
my 1st lumpectomy for DCIS (stage 0) just last week did not clear margins. I am so bummed, because believed the area was very small pre-surgery. it ended up at 2.5 cm.
I love my surgeon but wonder if a fresh pair of eyes/different approach would be wise before going thru it again. I'm a 32A, there's not much room for guesswork the 2nd time around.
thanks for any advice, dancer in SF
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Dancer - I didn't have clear margins on my DCIS 3 years ago but went straight to radiation because I had a partial mastectomy so everything got rearranged. I loved my surgeon, too (Nima Griesom in SF at CPMC). I think it's understandable that you would want to seek another opinion. Not having clean margins is a bummer.
Three years later I got Stage 1 in my other breast. (not spread from my first one). I wish I had taken Tamoxifen or Armidex since I'm highly estrogen positive. I thought about getting a mastectomy but realized that another occurence in the second breast was a separate incident so I opted for a lumpectomy with rads again. I'm giving each breast one chance ;-)
I think that the mast. vs. lumpectomy decision can be an emotionally driven one (there was a great NY Times article about that last Sunday). I nearly went down the mast. route but very glad that I didn't given the pain and discomfort from reconstruction with flap or implants. I might have to go that route someday - but not yet. Just regular MRIs for me going forward (which is what caught my Stage 1 this time around) and estrogen reducing measures like nutrition, exercise, AI's, supplements.
Irish/Deb
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Dancer, I changed doctors after my biopsy because my original BS left me feeling like she didn't understand me nor did she really review my chart before an appointment. I believe if you need to get a second opinion for piece of mind by all means do it. But if you trust your BS and have confidence in her/him, sit down with your doctor and talk about your situation.
I was a 30AA (and that was a true size as I had gone in for a fitting) when I was diagnosed.
Best of luck to you. Remember it's your decision. I often think I read way too much on BC and then begin second guessing myself, I have to step away at times😃.
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dancer--
I just want to say that needing a re-excision or having a larger area of cancer than expected are not signs of a bad surgeon. Getting clear margins the first time is pretty easy if they just aggressively take a large amount out. But DCIS is not usually visible and if they are trying to leave a good appearance they may need more than one try to get good margins.
Having said that, I think a second opinion is always warranted if you have doubts.
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Hi dancer, I did switch surgeons between the lumpectomy and the re-excisions (2), but that was because the DCIS diagnosis did not appear until the lumpectomy and I wanted a DCIS specialist for the re-excision. As it turns out, the first surgeon did not "mark" the margins (a special inking process), so the second surgeon had to go by feel for that second surgery and ultimately there needed to be a third surgery, because the margins weren't clean after the second surgery (it was a large multifocal area of DCIS). It is possible that if I'd gone to the second surgeon from the beginning, I might not have needed the third surgery, but I wouldn't have even thought to go to her. I wasn't expecting a cancer diagnosis (although there was a chance-birads 4b), so I went to my general surgeon who had done multiple surgical biopsies for me in the past. If you read the threads, you will see that re-excision is common for DCIS as Red Sox stated. The only thing they can go by is visible calcifications, but the DCIS can be more extensive (and not always visible to imaging). It's always a tough call with a small breast like yours.
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Dancer, as you can see by my stats below, I had a re-excision, although my margins were clean. The reason was that one pesky margin was less than a mm and my rad onc required that I have nice large margins because I was in a clinical trial of partial breast rads so back I went. I kept the same surgeon since she is head of the BS dept at Yale and I knew I was in good hands. She was more upset than I was! She just kept saying...so sorry, and darn it!! They go in completely blind as the spots are microscopic! It is up to you, but this truly is common. Best whatever you decide!
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Dancer, I didn't have clear margins the first time either. It is very common. I had a lumpectomy.
Diane
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Two weeks ago I was told I have an invasive DCIS in my left breast. I have spent these two weeks visiting doctors and trying to decide whether to have a lumpie (makes it sound less frightening) or a BMX (which seems like a rather drastic solution to what I may be very foolishly hoping is a small problem). I am 69, retired, have five fantastic grandchildren and have two horses that I do all caretaking for, so being physically active is important to me. I am considering a BMX (I haven't worn a bra for four years) because they are no longer comfortable and the idea of not having breasts to deal with is very appealing. But that's how I feel today. What happens if two or three years from now I realize I feel very self-conscious without them. I read Beesie's post and found it very helpful. Has anyone ever had a BMX and then waited for, say, a year or two before they decided to have reconstruction? The idea of having a lumpectomy sounds great, but the radiation scares me. If this cancer has spread to the lumph nodes and they do a MX, wouldn't I be better off self-imagewise if they did a BMX? I'm not sure this diagnosis has truly sunk in yet. How am I supposed to make all these orther decisions as well?
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My PS told me I can wait months or even years to have a reconstruction. I'm 64 and have chosen a BMX in two weeks. I plan on having a DIEP, but my PS won't do it until I heal from the BMX.
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Hi Dwiddlepop! I am so sorry you have had to join us here, but glad you found us. We have all had the same worries that you are facing now about Lumpectomy or Mx. There is a group that call themselves Flat and Fabulous, who have a Facebook page and there are groups of women here who have had every kind of recon there is. You can find information on just about anything that concerns you, by searching this site.
I am slightly different, as I decided to just have a Umx, I couldn't in good conscience, remove my good breast. My surgeon was very supportive of all my decisions. I wasn't happy about having Rads, for a number of reasons and although I was aware that it may still be something I would have to consider, if my Final Pathology deemed it necessary, I decided to take the UMx route with a Sentinel Node Biopsy. Fortunately, my original Dx didn't change after surgery so Rads weren't necessary.
My Surgeon told me, if I decided down the track that I wanted to reconstruct, the door would still be open. I knew I would never be interested in recon, and I haven't wavered from that feeling, in the 22 months since my surgery. I think I was conditioned by my Mother who had BC in '94. I looked after her and was very used to her appearance and Uni scar. She had such a style and grace about her, that it made my decision easy.
I have researched and shopped to put together a wardrobe of breast forms and foobs, and clothing, so I am more than happy with my uni status, I can wear just about anything I want, I even occasionally go half flat and have no confidence issues at all.
If there was any advice that I would want to pass on to you, it would be to make the decision that suits you, don't be influenced by others, just take it all in and work out what will be right for you and your situation. All too often we hear about surgeons trying to persuade women that immediate recon is the way to go, only to find that after doing it, they are not happy with the results. It is a huge decision that shouldn't be taken lightly.
I wish you all the very best, let us know how you get on!
Good luck to you too, mefromcc!
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I have chosen to have a Bilateral Prophylactic Mastectomy, with DCIS Grade 2-3, both ER and PR Positive. Why? Mine is CURRENTLY Non-Invasive, and if it is non-invasive while I have surgery...then I will not ever have to stress and worry again! I just can not go through this again....I am young and KNOW there is a lot of cancer in my family...not Breast Cancer...but Other cancers. I just can not handle the stress and worry anymore. So...I guess to simply answer your question....Mental Well-Being, for my Peace of Mind...
Much Love
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Airsong - thinking of you and hoping your surgery goes well tomorrow.
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I am 43 and just diagnosed with DCIS stage 0 (nearing stage 1). The affected area is 3" x 1" so I am considering mastectomy rather than lumpectomy. I would appreciate some feedback from others who have had the Flap reconstruction. How long was your surgery and hospital stay? How long was your recovery etc? Anything you think i should know or consider before making my final decision?
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Hi Contrary,
I was 41 when diagnosed with DCIS. Initially, I had a choice between lumpectomy/radiation or mastectomy. Sometime between diagnosis and surgery, they decided that my DCIS was too vast and my breast size too small to achieve a great physical outcome with a lumpectomy. They relayed that I would have half a breast.
I did end up having a latissimus dorsi (from back) procedure as I was thin, then, with little fat elsewhere.
I was in the hospital after the surgery for about 3 or 4 nights. This was a while back so I am trying to remember. I drove sooner than I should have, I recall. Certainly, the tightness remained for a long while. My mobility is good. No complaints.
Contrary, are you not a candidate for a tissue expander and implant should you decide to have the mastectomy?
Best Wishes and Warm Thoughts.
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Hi all, I'd like to thank everyone who shares his experience, it is really helpful especially for me as I recently diagnosed with Dcis. It all started when I felt a lump in my left breast. After mammogram and ultrasound and MRI, I was told by four doctors that I have BC stage 2 and I have to do lumpectomy followed by chemo and radiation . One of them asked for biopsy, I did two in two different hospitals, it came up with good results: benign radial scar with hyperplasia that has to be removed with limited lumpectomy. I did the surgery and I thought that i am done. The pathology report confirmed LCIS that have been removed and DCIS lesion linked to my radial scar that wasn't completely removed and positive margin.
My concerns are: I am really afraid that my margins become positive again and go for mastectomy next surgery although my surgeon said it is mire likely that he can get positive margins. He said he doesn't need to remove sentinental node which concerns me. The pathology report didn't include whether my DCIS is Er or not, I really wanted yo know that to to consider Tamoxfin or not.
I had seroma after lumpectomy and I feel pain in my breast because of the rest of seroma that left after aspiration. I feel pain in my chest wall, fast heart beats, and fatigue. I think this is because I am so worried.
I hope next surgery goes well and I hope complete recovery for u all.
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Hi roobashine - just wanted to respond to your concern about the sentinel node biopsy (or lack thereof). When you are having a lumpectomy, there is no need to have one unless there is reason to believe that you have invasive cancer, as in the event that invasive cancer is found, they can then go back later to do the node biopsy. With a mastectomy, it is often done "just in case" as there is no way to go back and do it afterwards.
Hoping that your doctor is right and that they can get clear margins with a re-excision. At this point, given the DCIS was found by accident, there is no reason to think that they can't, but I would hope they would do some additional imaging first such as a MRI to try to get a better idea of what they are trying to remove, rather than just cutting blindly.
Best of luck to you!
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Annette, Perhaps it is different for Roobashine's particular set of diagnosis, but for me, it was a given that I would have a sentinel node biopsy at the time of the lumpectomy to make certain the cancer had not spread to my lymph nodes. I personally don't know of anyone in my set of circumstances who would not have a sentinel node biopsy.0 -
MomMom - from your diagnosis, you were diagnosed with INVASIVE cancer. DCIS is by nature non-invasive, and if there is no reason to suspect that there is anything other than non-invasive cancer present there is no reason to check the lymph nodes as DCIS by definition is incapable of spreading to the nodes. There are many women who have had lumpectomies for pure DCIS who have not had sentinel node biopsies. Those (such as yourself, as well as myself) who are known to have invasive cancer, no matter how small, from the initial biopsy are in a different position from those with no known invasion.
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Annette, You are correct. I didn't catch the DCIS in the post.
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hi there
Contrary' post caught my eye. I was diagnosed oct 2013 with DCIS stage 0. When all tests were done, I had DCIS at 12:00, 3:00 and 9:00 from my nipple. Since my sister has also has BC, (even though not same DX) I opted for UMX with tramflap recon. It's been a year plus, and while I still feel the effects, (tightness, lack of strength, etc) it was the right decision for me. I am a teacher and I was off work for 3 months. I find it tiring to stand all day, but my energy and stamina has come back well. I exercise regularly and while I am not as fit as before, I am ok. My "new" breast feels soft, and it moves like my other. I just got my tattoo, so I am considered discharged. I had some problems with arimidex and so don't know what my next steps will be. I am leaning toward no meds. LMK if you have any other questions -ann
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Hi all, thanks alot for the replies. It feels great that you are here to share with my feelings and concerns. I am going to do the second surgery on wednsday. I hope it goes well. Thank u so much and wish me luck.
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I had a lumpectomy in 2007 and then in 2008 in my first mammogram they saw other spots. So after the lumpectomy and rads in 2007, I had BMX and no cancer found. If you see the stats, about one third of women who have lumpectomy end up having mastectomy. Just happens.
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I am an RN who is facing this diagnosis with the knowledge of how painful cancer treatment is and the long term and short term risks that exist and now that I am the patient I am taking the time to really figure out what the f@#$ to do. Is your mind open to alternative therapies that are out there? This may open your eyes and start you asking questions and exploring other methods of treatment besides chemotherapy, radiation and surgery. There is a few dudes in this that I didn't like but most of them are medical doctors whose eyes have been opened themselves. One stat that was shocking to me was that 80% of poled physicians would not recommend any of the big 3 western medical cancer fighting tools for their own loved ones and certainly not themselves. I mean the sceptic in me is like "where did that stat come from?", but it makes sense when you think about the logic in giving heavy toxic carcinogens to treat cancer. Seems crazy, right? I've seen 2 naturopaths and have appointments with 2 oncologists and I wanna know what's right for me with out being bullied into anything I don't feel comfortable with. This is Part 1 and I am on to part 2 and the rest of the series for more info.
http://thetruthaboutcancer.com/episode-1-modern-medicine-c…/
EPISODE 1: Modern Medicine & The Cancer EpidemicEpisode 1 will lay the foundation as to why cancer has reached epic proportions worldwide and why the current treatment model (chemo, radiation, surgery) just isn't working.THETRUTHABOUTCANCER.COM0 -
I was originally scheduled for a lumpectomy with 30+ sessions of radiation. After the MRI showed the lump was significantly larger than they thought, mastectomy became the only real option.
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Hello Ladies!
I was recently diagnosed with intraductal papillary lesion on my left breast. My doctor recommended me a surgeon and I already met with him but I would like to get a second opinion. Could you please recomend me a good doctor in New Jersey.
In my previews experience the doctor really didn't mention treatment options or ask me my preferences about the different kinds of treatments... I felt like he just wanted to impose his decision on the kind of surgery and treatment... He wouldn't even make eye contact.
Thank you!
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Dear ruansa, welcome to BC.org, although we're sorry you've had to join this great community!
You can read helpful tips on Getting a Second Opinion at the main Breastcancer.org site, including why, where and when to get them, and what to expect. Please keep us informed on how you're doing!
The Mods
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I had DCIS in my right breast, diagnosed at the beginning of this year. My surgeon decided to do the genetic testing as I am in my early 40s. The result indicated a genetic mutation called ATM, responsible with breast cancer. I based my further treatment decision on this result. Lumpectomy was still an option but, due to high risk for BC, high nuclear grade and cancer running in my family ( no breast cancer though) I decided a double mastectomy would be the right direction for me to put my mind at ease. Also, the perspective of no radiation and no Tamoxifen ( I also have numerous uterine fibroids) was another decisional factor. In addition, I had small breasts prior the diagnosis and was told that there might be cosmetic issues as the affected breast might end up being smaller after lumpectomy. Of course, this was not the most major concern but it factored in the final decision. I am now a week after my final reconstruction surgery and I am pleased with the result. My understanding is that that clinical trials on DCIS demonstrated no differences in the survival rates between lumpectomy and mastectomy, so it is in the end a personal decision.
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For me, a diagnosis at 44 with DCIS was just such a shock. I'd gone fairly routinely for mammo's since about 35 factoring a family history and due to being dense (my husband asks if that's just my breast tissue or my head too?! wise guy!) I nearly always was asked back for additional images and an ultrasound. This time around when the radiologist said the word biopsy I was like say whut? That day was the first day I realized oh gosh what if this is something and not the usual nothing? I found the needle core biopsy to be plain and simply terrible. There is just something awkward about laying face down, the girls hanging in the wind and the poke and pressure of the many needle bites. What a vulnerable feeling that left in me. A necessary evil though. Fast forward to diagnosis, the oncology doctor went thru my options: lumpectomy + 5 weeks of radiation, single mastectomy or a double mastectomy. My little cluster of fun cells were right up at 12 o'clock mark. Not an ideal location in my humble opinion. What occurred to me is even with this diagnosis being "pre-cancerous" I knew I did not want anything cancerous in me p-e-r-i-o-d and so the option of a divot/indent and 5 weeks of radiation with the possibility of discolored skin and worry over the next many years on whether the cancer would reoccur either in the same side or the other. Uh no. Give me a double please! And so that's what I did. I've had bumps in the road since the double, some skin necrosis that had to be surgically revised, and a slow and juicy heal process on the cancer side that has now resulted in my PS's removal of one TE. Imagine misshapen barely expanded TE foob on the left side and concave skin folded into itself lumpy flatness on the right. Only cute to a fellow survivor probably and don't even get me started on how the nips look. Does the calico color ever go back to the color they were pre-surgery is what i want to know? In my rose colored world, these TE pups would have been expanded to bubbly goodness and I'd be gearing up for the swap out for silicon or saline. In the end, and from extensively trolling the community pages of my fellow sister warriors I find the clarity that this isn't a sprint it's a marathon and I want to finish STRONG. This stuff is definitely personal
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